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Doctors Have Legal Duty Over DNR Orders

June 17, 2014

Doctors have a legal duty to consult with and inform patients if they want to place a Do Not Resuscitate (DNR) order on medical notes, says the Court of Appeal in England.

The issue was raised by a landmark judgement that found doctors at Addenbrooke’s Hospital, in Cambridge, had acted unlawfully.

Janet Tracey, who had terminal lung cancer, died there three years ago.

Her family say she and they were not consulted when a DNR notice was placed.

Guidelines for doctors already recommend that patients and families are involved in such decisions, but the court ruling now makes it a legal requirement.

In the judgment, the Master of the Rolls, Lord Dyson, said: “A Do Not Attempt Cardiac Pulmonary Resuscitation decision is one which will potentially deprive the patient of life-saving treatment, there should be a presumption in favour of patient involvement.

“There need to be convincing reasons not to involve the patient.”

He went on to warn that “doctors should be wary of being too ready to exclude patients from the process on the grounds that their involvement is likely to distress them”.

DNR

Mrs Tracey, from Ware, in Hertfordshire, was suffering from advanced lung cancer when she was taken to hospital after a serious car crash.

Her husband and daughters were distressed when a “do not resuscitate” notice was put on her hospital records.

It was cancelled after the family complained, though a second was later put in place – after talks with the family and two days before Mrs Tracey died at the age of 63.

Since her death, Janet’s husband, David, has fought for a full judicial review to seek clarity over DNR notices and consent.

Speaking after the judgment David Tracey said: “We’re all so pleased that the Court has agreed that imposing a do not resuscitate order on Janet without consulting with her was unlawful.

“It feels as though the wrong done to Janet has been recognised by the Court and the fact that her death has led to greater clarity in the law gives us all some small comfort.”

Lawyers Leigh Day, on behalf of the Tracey family, said: “The Judgment sends a clear message to all NHS Trusts, regulatory bodies and healthcare professionals that patients have a legal right to be informed and consulted in relation to decisions to withhold resuscitation.

“The belief such information would cause distress is no longer a sufficient reason not to inform and consult with a patient. There must now be convincing reasons to displace this right.”

The ruling does not give patients the right to have CPR, but it does mean they should be consulted.

Dr Keith McNeil, the head of Cambridge University Hospitals NHS Foundation Trust in charge of Addenbrooke’s said: “Today’s ruling hinges on a specific point of law. There was no criticism of our clinical care.

“It is a fact of life that every day people die in hospitals. From my own experience as a specialist hospital doctor, the most important thing is that these patients are treated with the utmost respect and dignity.

“End of life situations involve doctors and nurses having emotionally challenging but necessary conversations, with patients and their families about what happens in the final stages of their care. Medical staff use a combination of their compassion, experience and judgement at these difficult times, to try and find the right pathway for each individual patient, and provide the support needed for everybody involved.”

ESA: Massive Increase In Support Group Chances Under Coalition

June 17, 2014

Many thanks to Benefits And Work.

 

The latest work capability assessment (WCA) outcome statistics released last week show an extraordinary rise in the proportion of claimants qualifying for employment and support allowance (ESA) and a truly massive increase in the proportion being placed in the support group since the coalition came to power.

The most recent statistics cover the period from July to September 2013.

support group statistics

They show that 27% of new ESA claimants were found fit for work.

In the quarter immediately before the coalition came to power, on the other hand, the proportion of claimants being found fit for work was 61%.

So the percentage being found fit for work under IDS has more than halved.

But it’s the increase in the proportion of claimants being put in the support group that has been the most astonishing. When IDs became a minister it stood at 10%.

It is now an extraordinary 57% of new claimants being put straight into the support group.

In other words, you are almost six times as likely to be put into the support group under the coalition as you were under Labour.

Meanwhile, the proportion of new ESA claimants being placed in the work-related activity group has fallen from 29% to 16%.

It’s true that there is such a massive backlog of ESA claims now that these figures may change when all the assessments have been done: there has been a particularly big rise in support group percentages in last three quarters that stats are available for.

But this isn’t just a blip: the proportion going into the support group has risen every single quarter since IDS took over. It had more than trebled by the beginning of 2012.

So, whilst the DWP press office has been crowing this week about an almost 90% reduction in appeal rates, they are keeping very quiet indeed about the growing proportion of ESA claimants who have no reason whatsoever to appeal.

You can download the full set of WCA outcome statistics here.

Who Is Currently Being Sent For An ESA Medical?

June 17, 2014

Many thanks to Benefits And Work.

 

Evidence given to the Commons Work and Pensions committee by the DWP and by Atos last week has shed a little more light on the confusion around which groups of employment and support allowance (ESA) claimants are currently being sent for a work capability (WCA) medical assessment.

Currently there is a backlog of 700,000 cases awaiting assessment. According to information given to the BBC by the DWP:

  • 394,000 are new claimants for ESA.
  • 234,000 are existing ESA claimants whose re-referrals have been delayed.
  • 84,000 are people still on incapacity benefit who have not yet been moved over to ESA.

New claims
New claims are still being sent to Atos for assessment in the normal way, but because of the backlog they are taking much longer to be seen.

IB to ESA reassessments
There are still 800,000 incapacity benefit claimants waiting to be assessed for ESA, a process that should have been completed in April of this year. In evidence to the committee atos said that these referrals had been stopped. However, the DWP told the committee that this was incorrect and that they are now forwarding these cases to Atos at the rate of 5,000 a month. It is therefore likely to be well into next year before the final incapacity benefit claimants are assessed.

Existing ESA claimant re-referrals
According to the DWP and to Atos no existing ESA claimants are being reviewed, Atos call this a re-referral, unless there has been a change in their circumstances.

However, Atos did say that they have existing ESA claimants who had already been passed to them by the DWP before they stopped re-referrals but who they have not yet assessed. So some existing claimants may still find themselves called for a medical in the coming months.

You can download the transcript of the Atos evidence to the work and pensions committee here.

You can download the transcript of the DWP evidence to the work and pensions committee here.

Well over half a million sickness benefits appeals have succeeded – why has the DWP kept this quiet?

June 17, 2014

With many thanks to ilegal.

DWP ministers said only 9% of ESA decisions were wrong.  Our research reveals the DWP have been quoting from figures which state 151,800 appeals have succeeded.  Our evidence shows the true figure to be at least 567,634 – casting serious doubt over 43% of 1,302,200 ‘fit for work’ decisions. 
 

ilegal Press Release – 16th June 2013


DWP’s internal figures reveal a much higher number of successful ESA appeals than have been made publicly available. 

A DWP reply on 13 June 2014 to a Freedom of Information Act request made as part of an investigation in to DWP figures relating to the controversial Work Capability Assessment by ilegal.org.uk has revealed that of 1,287,323 ESA appeals, at least 567,634 claimants have had the original DWP decision overturned in their favour.

Government’s key defence of the assessments has been that around 9% of all decisions are incorrect.  The most controversial of which are those where a claimant is found fit for work.  DWP figures (for new claims) show that between October 2008 and September 2013 a total of 1,306,200 fit for work decisions have been made.  

It is with considerable disappointment noted that the DWP’s latest publicly available statistics confirm that only 151,800 successful appeals have been recorded out of a total of 410,400 appeals (for new claimants only).  Our investigations reveal evidence of three times as many appeals being ‘internally recorded’ of which
567,634 have been successful.  The DWP have revealed to us figures which show nearly quarter of a million internal reconsiderations have led to decisions on new ESA claims being overturned in favour of the claimant; we have added these to figures from HMCTS tribunals which provides us with a much higher figure than the DWP seems to be prepared to admit to in their publicly available figures. 

Our intensive research into the assessment of claimants for the DWP’s Employment & Support Allowance (ESA) has, following a freedom of information request to the DWP, provided one of the final pieces of the jigsaw needed to unpick the Department’s overly complicated statistics. We now have the final clue which has enabled us to identify that no less than 567,634 ESA claimants have in fact had their initial ESA refusals overturned in their favour.

It is a startling revelation that the government department has apparently been keeping a lid on a set of statistics that clearly shows between May 2010 and June 2013 no less than 820,356 decisions were looked at again by the DWP after claimants had been assessed by the controversial private contractors Atos Healthcare. These ‘internal’ statistics show that a very substantial 232,782 (28.5%) decisions were then subsequently overturned in the claimant’s favour.

What makes this all the worse is that these reconsideration statistics come on top of separate figures that show us that of those claimants who did not have the decisions overturned in their favour by the DWP, 817,102 went on to appeal to tribunals arranged by Her Majesties’ Courts & Tribunals Service where a further 332,607 were then overturned in the claimant’s favour by the tribunal.

These figures completely negate all of the DWP’s claims that it is getting the majority of its decisions right

These figures completely negate all of the DWP’s claims that it is getting the majority of its decisions right. Government ministers in conjunction with the DWP’s Press office have been telling us that a million claimants have been found fit for work whereas these figures show that in reality this is only a small part of the true story and that huge numbers have gone on to successfully appeal decisions which were wrong.

These new figures highlight the dubious practice of using the unchallenged assessment results, which only encourage media sensationalisation, with headlines such as those appearing in the Daily Express in July 2011 stating that ‘75% on sickness benefits were faking’. The same article goes on to say that out of ‘…2.6 million on the sick, 1.9 million could work’ before receiving an endorsement from the Prime Minister with an assurance that his government was “producing a much better system where we put people through their paces and say that if you can work, you should work”.

DWP and Ministers know the truth, they just aren’t telling anyone

These figures have been available to the DWP and its ministers since April 2010 from their ‘Decision Making & Appeals Case Recorder (DMACR) – ESA Management Information Statistics’. The DWP confirms this to be unpublished information which is for internal department information only, yet our research notes that the Right Hon Chris Grayling was using the same information in answer to Parliamentary questions on the 10th January 2012.

We question then why the DWP has consistently ‘over promoted’ only the results of Work Capability Assessments relating to ‘initial’ decisions (including the opinions of Atos Healthcare in the absence of a statutory DWP decision) when it could instead have come clean and declared how hundreds of thousands of their incorrect decisions have since been overturned in favour of the person appealing.

These revelations seriously undermine the DWP’s contention that the initial Work Capability Assessment outcomes are a valid measure of the claimant’s ability to work. The DWP has consistently defended its assessments by giving an impression that only a relatively low number of decisions have been overturned whereas the reality is that well over half a million have resulted in a successful outcome for the claimant.

And this DOES NOT include the 712,000 people awaiting assessments BEFORE they can appeal

This news must have come as cause for grave concern when considered in the light of a recent revelation by DWP Minister Mike Penning which revealed that in addition to the figures we have highlighted, a further 712,000 Employment & Support Allowance claimants are awaiting assessments without which they cannot yet appeal.

This hugely unacceptable backlog of cases means people with disabling medical conditions are left hanging for months and months on a basic allowance way below what they are entitled to. This is leaving hundreds of thousands deprived of the support they require and means having to scrape by on money which is wholly insufficient to meet their needs due to disability and illness. It also means many claimants affected by severe and complex mental health conditions are facing prolonged torment as they wait month upon month for their decision to be overturned before they can even lodge an appeal.

Face up to reality: it doesn’t work. Scrap the WCA

These findings add considerably to the pleas of disabled groups all over the country to scrap the Work Capability Assessment (WCA) and to find a better way to assess their needs.

It is simply appalling that the DWP, along with Ministers and other government spokespeople appear to be feeding the media with misleading statistics that are unrepresentative of the real story and instead encourage headlines vilifying the disabled and the genuinely ill. These figures clearly show the DWP has evidence in their possession which shows how in far too many cases the decisions it is making are dead wrong and they know they’re dead wrong.

Mary Laver- 2014 Update

June 17, 2014

Many of you would have seen the last film on Mary Laver, Cameron’s Cruellest Cut. Here’s an update.

This Says It All About Tory MPs

June 16, 2014

This graphic says it all…

 

andrew selous mp

Lily Allen- I Was Born In The 80s

June 16, 2014

I don’t endorse the swearwords! However I do love celebrities who use ther fame to speak out and tell the truth. So thank you Lily Allen!

Sheila Gilmore MP’s Speech For Mandatory Reconsideration Debate Tonight

June 16, 2014

Cancer Patients Waiting Months For PIP Finds Macmillan Study

June 16, 2014

Thousands of cancer patients are waiting months to get vital benefits, a charity claims today.

Macmillan Cancer Support found people faced “shattering” delays after applying for help from the state.

Patients had an average wait of 19 weeks but an estimated 4,500 were still not assessed after six months.

Some terminally ill sufferers died before a decision was made.

A third of patients said hold-ups left them anxious or depressed, while more than half struggled financially.

Macmillan blamed the ­introduction of personal independence payments, which were recently brought in by Tory Work and Pensions Secretary Iain Duncan Smith to replace disability living allowance.

Most assessments were carried out by under-fire firm Atos, which has decided to exit its £500million ­Government contract early.

Duleep Allirajah, head of policy at Macmillan, said: “Our report shows the real and shattering impact these PIP delays have on cancer patients.

“It is unacceptable that people struggle to heat their homes, are saddled with debt or are left anxious or depressed because they are waiting so long for much-needed benefits.

“These delays are a further blow to cancer patients who have to prove they have been affected for at least three months before the state considers them eligible for help.”

The payment provides up to £79 a week towards the cost of dressing, eating and washing, and up to £55 for travel. Londoner Jodie Patten, 31, said she applied a month after being ­diagnosed with breast and bone cancer in October but had yet to be assessed. She said: “I have had to constantly call up to find out what is happening with my application.

“I have worked all my life, paid my taxes, and it feels like I’m begging for money. I already have to worry about cancer and I don’t need to worry about paying the bills as well.”

47-year-old Shola Fayomi, also from London, applied for PIP after major surgery for cancer in her chest.

Yet nearly a year after he diagnosis she is still waiting for a decision.

The mental health nurse said: “I believe delays are intentional so they hope people will improve and when they make the assessment they won’t meet the criteria. It’s disgraceful.”

Macmillan, which sur­­veyed 210 patients, called for waiting times to be cut to 11 weeks – the average for disability living allowance decisions.

In response, the Department for Work and Pensions said: “The report is based on a very small sample size using simplistic calculations to produce results which should, at best, be treated with extreme caution.

“Claims for terminally ill people are fast-tracked using special rules under PIP and statistics show that more than 99% of people with terminal illnesses who have applied have been awarded the benefit. Over 10,000 terminally ill claimants are receiving PIP.”

Army Of Carers Plan Virtual Strike On Saturday In Plea To IDS

June 16, 2014

Thanks to the Welfare News Service.

 

An ‘army’ of home carers are planning a virtual strike on 21 June 2014 to highlight the governments non-recognition of those who work ’round the clock’ caring for sick, elderly and/or disabled friends and relatives.

The organiser behind the event, who is unnamed but describes herself as a ‘carer with attitude’, says that she has been caring for her daughter for 13 years, whilst also working single-handedly to earn enough money to support herself and her family.

Writing on the campaign website, the organiser says: “I’ve spent those 13 years in a haze of exhaustion and poverty and anxiety, listening to other people telling me how tired, hard-working, ill-paid and hard pressed they are.”

As part of the strike, hundreds of carers (at the time of publishing this article) have signed a letter to the Secretary of State for Work and Pensions, Iain Duncan Smith MP. The letter reads:

“Dear Iain Duncan Smith,

“I am writing to tell you about the proposed strike of the UK’s family carers on 21 June.

“Have you ever been on duty – responsible for someone’s life – 168 hours a week, week in, week out? It is quite as dreadful as it sounds. You have difficulty with everything: working, sleeping, socialising, existing. And, no, you don’t get used to it.

“Many – most – carers struggle with difficult daily conflicts between work and care, and an estimated one million have had to give up work or reduce their hours and lose much-needed income. (And often a lot of freedom, companionship and self-esteem in the bargain). As money worries cause stress, it’s hardly surprising that a lot of carers are also suffering from anxiety and depression because of finance.

“Successive governments have failed to support us.

“Loss of life, of income, of individuality. It’s a huge price to pay for love. Yet we don’t expect to be thought of as noble: we do it because we care and there are no other options . But it isn’t surprising that we would rather be thought of as the workers we are rather than the saints we are not and be treated accordingly.

“This is why we, the unpaid carers of Britain are going on strike. A strike with a difference – we Carers will only be withdrawing our labour virtually. And so, unlike with a real strike, we can ensure that our loved ones will stay alive and safe and protected.

“There is no way that the state can compensate us for the sheer amount of time we give up voluntarily. But you can prevent it from wrecking our lives and futures and making us an unwilling burden on the state when our caring work is over. We want you to recognise and recompense the work of the nation’s unpaid carers. Not for justice – though it would be just. But to ensure the country designs a robust response to the caring crisis that is coming upon us.”

The letter then lists a series of ‘modest, affordable and practical’ demands:

  • 1: Carers Allowance for all live-in carers, irrespective of age or employment, just as DLA/PIP is given to those we care for.
  • 2: A state-funded occupational pension scheme for each full-time carer to reflect what we might expect to have if we were working, say, only an 80 hours a week at minimum wage.
  • 3: Solid practical careers advice and training for working-age carers to help us train for and sustain appropriate work within our environment and to provide us with the luxury of a working life should our caring duties finish.
  • 4: Social housing to recognise the requirements of disability and caring in the allocation of rooms. Sufficient appropriate accommodation purpose-built for the disabilities of the local population – because if it is not provided this is a huge stress on carers.
  • 5: State money ONLY given to organisations that offer properly targeted transport-accessible fit-for-purpose help for every carer who needs it.

The letter signs off with a plea to Mr Duncan Smith to ‘listen to our voices – The Family Carers Of Britain’.

You can add your name to the letter here.

IDS on BBC ‘Question Time’ 2014

June 16, 2014

imatigerrr's avatarimatigerrr

https://twitter.com/Scriptonite/status/477813738494779392

Response by Artist Taxi Driver:

“Ask him about the Red cross being in the country, ask him about the disabled…the suicides…the people who have taken their own lives..been shamed..the workfare programme…forced…

View original post 328 more words

Erica Blaza: Ended Life After NHS Operation Refused

June 16, 2014

A British woman took her own life at the ‘death clinic’ Dignitas after being denied a pioneering operation on the NHS.

Despite not suffering from a terminal illness, Erica Blaza, 51, went to the Swiss clinic to die after suffering two years of ‘indescribable agony’ triggered by a stroke.

Four months earlier Mrs Blaza had written to Health Secretary Jeremy Hunt pleading with him to fund a £45,000 brain operation.

‘I am losing the will to carry on, the pain is worse and my life is a  living hell spent in bed,’ she wrote.

‘I beg you to help me.’

But she received no reply, and was told by frustrated surgeons that her case was not considered ‘exceptional’ enough for NHS funding.

Dozens of other British patients with the condition have been left suicidal since being turned down for the same surgery, and at least one other patient has killed herself

In a diary written before her death, Mrs Blaza reveals how she preferred to die at Dignitas than live on in agony for another few months while her operation was delayed.

Having been turned down by the NHS, she was forced to pay to have the operation privately – only for the neurosurgeon who was due to perform the operation to break his wrist, delaying the operation.

After trying every other possible medical treatment she told her husband Pete Finch: ‘I’ve had enough’ and travelled to Dignitas, where she took lethal drugs last October.

Assisting a suicide is illegal in Britain. But while in Switzerland the couple from Hoole, near Chester, were contacted by British police who astonishingly advised them to make a video of events.

Mr Finch was questioned by police on his return to Britain, and no charges have so far been brought. The Crown Prosecution Service say his case is ‘under consideration’.

Mrs Blaza did not blame NHS staff for her situation, but last night, her husband said: ‘If there had been NHS funding for that operation she may still be here today.’

Professor Tipu Aziz at Oxford’s John Radcliffe Hospital pioneered  a treatment which involves inserting electrodes into the brain.

ASSISTED SUICIDE IS ILLEGAL… BUT THE LAW’S NOT ENFORCED

Assisted suicide is illegal under the Suicide Act 1961 and carries a maximum 14 year jail sentence.

The Director of Public Prosecutions (DPP) decides whether an individual may be prosecuted.

In 2009 campaigner Debbie Purdy, who has  multiple sclerosis, won a House of Lords ruling after challenging the DPP to spell out when prosecutions would and would not be pursued.

The following February Keir Starmer QC, who then held the position, published guidelines stating prosecutions must be in the public interest and take account of the suspect’s motivation.

Police forces and the Crown Prosecution Services  have largely interpreted this as meaning they should not seek to prosecute if a person has helped someone to die on compassionate grounds.

This has led to concerns forces are not investigating some cases.

Labour peer Lord Falconer wants to go further and introduce a new ‘assisted dying’ law. His bill is currently before the House of Lords.

But just weeks before Mrs Blaza was due to be treated, NHS funding was abruptly cut. Every day Erica’s pain intensified. Mr Finch said: ‘Every waking moment was agony.’

Prof Aziz said he could only apply for funding for cases when the patient was in exceptional pain. ‘But how can you prove that a patient in pain is any more exceptional than another? It’s a nonsense,’ he said

He has had to turn away ‘about 60’ UK patients since then, but continues to treat Irish patients, whose Government funds the procedures.

He revealed another woman ‘effectively killed herself… When funding was turned down she turned up her opiates so much that when her gall bladder burst, she didn’t feel it and she died of septicaemia.’

Last night Alistair Thompson, of anti-euthanasia group Care Not Killing, said: ‘This is the first time I’ve heard of a police officer giving advice to make a video. It is very odd that they appear to be issuing advice on how to escape prosecution.’

But assisted suicide campaigner Dr Michael Irwin said: ‘I’m certain nobody has been charged for accompanying someone to Dignitas. There is a relaxed attitude from the police, as long as they are certain that it is an act of compassion.’

NHS England said: ‘Deep brain stimulation is a complicated treatment with potential serious risks and the NHS must only commission treatment where effectiveness is proven. This matter is currently being assessed by leading clinicians.’

A spokesman for the Health Secretary said: ‘Jeremy sends his sincerest condolences to the family in this tragic case.’

In her own searing words, Erica records her dying moments: ‘I asked for the drugs that would end more like. “No more pain tonight, love,” said Pete. “I love you,” I said.’ And then she drifted away

My name is Erica Blaza. In December 2011, on holiday  in Spain with my husband Pete, I had  a stroke. I was 49  and had never been seriously ill. After a week in hospital I came home to Chester,  only to have a second stroke.

The effects were far more severe. I could not speak, write, dress myself or brush my hair. But I set about re-learning these things: the first word I said was ‘beer’, much to Pete’s amusement.

I made slow, steady progress  but about a fortnight after returning home got very bad abdominal pain. Surgeons found  a strangulated hernia, and were able to ‘unpick’ my lower bowel.

At the end of the operation my heart stopped and I had to be resuscitated. They discovered I had a rare heart problem called Long QT syndrome, which means it can stop at any time. I was fitted with an implantable cardiac defibrillator – an ICD or I Can’t Die, which restarts the heart.

You might be thinking ‘My God, has this woman been unlucky?’

But this was just the start.

In February I returned home, deeply traumatised by it all. One night, after a dreadful panic attack, Pete and our friends took me to Chester hospital where  I was given a shot of the  anti-anxiety drug lorazepam.

Thirty minutes later I was Erica again! The transformation was incredible. It was a turning point. With help from a fantastic NHS speech therapist, and from Pete, I started getting my life back.

But in late March, out walking, the pain began. It started in the big toe, and by the next day it had spread to my whole right foot. We took it as a good thing, the ‘feeling coming back’.

A week later the pain had spread to my entire leg. My excellent  GP diagnosed ‘central post-stroke pain’, or CPSP, and my stroke consultant confirmed it.  There was no cure, he said, but there were things I could try. It could level off or even disappear.

It did not, and so began my fight with CPSP. Up to eight per cent of stroke sufferers get this, some mildly, but for some it’s debilitating. By June I was trying so much medication, some approved and some not, but the pain had spread to my entire right side and was much worse.

I was referred to Liverpool’s Walton Centre and met specialists in two cutting-edge techniques: transcranial magnetic stimulation and TMS deep brain stimulation, DBS.

Both options required me to have my ICD removed, as they could make it malfunction. So in March 2013 I had it taken out – even though that meant I could die at any moment. I didn’t mind: the thought of sudden death had become rather appealing.

The previous Christmas I’d told Pete I wanted to join Dignitas so  I could go there if nothing worked. Then I could at least end my life peacefully and be free from pain.

You see, until this happened  I didn’t realise you can be in absolute agony and nobody can help you. But Pete begged me to try everything first and I agreed to wait until I had tried TMS.

Unfortunately, the Walton Centre could not do TMS for me  at that time so I thought there was nothing else to try. The next day I began my application to join Dignitas, knowing their complicated approval process takes months.

They want medical records, psychiatric assessments, the lot. You can’t just phone up and ask to top yourself next Tuesday.

But then I was referred to Professor Tipu Aziz at the John Radcliffe Hospital in Oxford, who invented a new type of DBS, which has had positive results in 17 of 20 patients. We liked Prof Aziz straight away. He thought  I was a good candidate, telling me ‘I can help you’.

Of course there was a problem: the NHS had pretty much stopped funding it. But returning home Pete was elated: his enthusiasm was infectious and I felt more positive than I had for ages.

The pain continued to worsen. By July I was on enough tablets  to put me in a drug-induced sleep for 20 hours a day. Life was intolerable. I was desperate for this to end. Whenever I woke up  I was gutted I was still alive.

Then Prof Aziz emailed saying NHS funding had been denied.

By this time, my Dignitas application had been accepted and I told Pete I wanted to make final arrangements.

However, Prof Aziz agreed to do the treatment privately for £45,000. Breaking the news to me, like he’d won the lottery, Pete said: ‘It’s OK love, they are going to do it next month! We have to pay but so what?’ Mum insisted on paying half.

Six weeks later I woke to hear Pete shouting ‘NO! NO! NO!’, tears streaming down his face. Prof Aziz had broken his hand and foot and would be off work for at least three months. You couldn’t make it up, I remember thinking, so that was it.

I decided it was an omen and the operation would’ve gone badly anyway. There was no way I could carry on for another three months.

It was time, I told Pete, to go to Dignitas. I simply couldn’t endure this life of pain any longer. He didn’t want me to go and pleaded for help with anybody who’d listen.

He’s tried so hard for me the past 20 months. I know he really loves me and I love him so very much.

We have had almost 24 years together, but now I had to convince him to let me end my life.

Then the Walton Centre unexpectedly approved my TMS treatment. Pete was delighted. I was not. I’d had enough.

In September, still waiting for the machine, I awoke one night in terrible pain. I begged Pete to let me take an overdose and put a pillow over my face. We were both in tears but he just couldn’t do it.

Prof Paul Eldridge at the Walton Centre offered both TMS and conventional DBS, with all the inherent risks. It wasn’t going to happen. It could go wrong, stopping me going to Dignitas, I argued.

I was petrified of being stuck here, alive and in agony, for years. If assisted dying was allowed here I’d have tried everything, knowing that my suffering would end one way or the other.

So Pete and I struck a deal: I’d try less risky TMS and that was it. If it failed he’d accompany me to Switzerland.

After the first session I felt nothing, no pain relief. The next day’s session was the same. I only went to the third session – no effect – on condition I could call Dignitas.

The clinic said I could come next week. I didn’t hesitate. Pete booked the flights and hotel and we both burst into tears.

We flew to Switzerland. I was in utter agony but the fact the end of my pain was in sight lifted me.

A doctor saw me twice in the days beforehand to ensure my intent and explain the procedure, both mandatory under Swiss law.

It recognises people have the right to choose to end their lives suffering from an untreatable disease or pain. In the UK vets are allowed to put suffering animals to sleep.

How precious have we become when we don’t give ourselves the same basic rights?

Feeling guilty about wasting Prof Eldridge’s time, Pete emailed the Walton Centre to let them know we were here and thank them all.

At 1am the phone rang. It was Cheshire Police. Walton’s lawyers had told them I had gone to Dignitas. We both spoke to them and they advised Pete that it might be a good idea to make a video.

On Saturday they phoned again. I begged them to leave me alone, this was hard enough and the calls made me worried for Pete.

On Sunday we reminisced and at night Pete said: ‘We’ve got to have a drink together love, one last time.’ Half a lager was enough.

I woke twice that night in great pain. When Pete woke up in the morning there was nothing more to say and we gave each other a kiss.

At 11am Pete wheeled me to Dignitas. I first took a stomach-settling drink. After the minimum half-hour wait I asked for the sodium pentobarbital barbiturate solution to end my life.

I knocked it down like a shot of tequila and asked Pete to come and give me a cuddle. ‘No more pain tonight love,’ he said. ‘I love you,’ I said. ‘I love you even more’ he said. ‘No, really, I love you so much…’

[At this point Pete kissed Erica, and she died peacefully in his arms]

So if you’re reading this I must be dead.

This isn’t a rant, and I don’t blame anybody for what happened. Everybody helped me every step of the way.

The NHS was fantastic, unbelievable. My GP, exceptional. Sometimes things can’t be fixed.

You have to remember, as Pete does, that I am no longer in pain.

Love, Erica xxx

To read Erica’s full diary,  visit www.mailonline.co.uk/dignitasdiary

A decision that says: ‘Your life is of no value’

COMMENT BY BARONESS ILORA FINLAY, PROFESSOR AND PALLIATIVE MEDICINE

First and foremost it is tragic that our NHS denied treatment for central post-stroke pain, as suffered by Erica Blaza.

The message this sends out is that ‘your life is not of value any more; you no longer matter’.

Resources are finite, but as a  society we have a duty to care  for our citizens in their time of greatest need.

Hopelessness is terrible; depression and despair worsen the pain a person feels, because when someone is depressed the mechanisms in the brain that dampen down pain signals don’t work.

Given that Mrs Blaza was not going to be talked out of ending her life and was already abroad when she and her husband contacted the Walton Centre, it seems to me that the police tried to act  sensitively and compassionately in suggesting they made a video shortly before her suicide  at Dignitas.

The police and Director of Public Prosecutions recognise the tragedy of suicide and, if they are satisfied after looking carefully at all the evidence that it was her settled wish to end her life and that there has been no coercion of any kind, they may well take the view that prosecuting her husband for assisting her suicide is unnecessary.

But that is quite a different matter from setting up a licensing system for assisting suicides, which is what Lord Falconer’s Private Member’s Bill, currently before the House of Lords, seeks to do.

Our current law deters those with a malicious motive from encouraging suicide, yet recognises genuinely compassionate cases.

Licensing doctors to provide lethal drugs to terminally ill patients would be a major change to our criminal law.

It could have the perverse effect of reducing our efforts to relieve distress in the very ill.

It could encourage us as a society to take the cheaper option of helping people to kill themselves.
I do not think that is the right road for us to take.’

  • Baroness Finlay of Llandaff  is a crossbench peer, professor of palliative medicine at  Cardiff University and a former president of the Royal Society of Medicine.

Half Of Autistic Adults Abused By Friends Finds Study

June 16, 2014

Before her grandson’s condition became clear, Margaret Palmer generally thought the best of people. Now she has a very different view.

“The cruelty, the unkindness, the lack of understanding towards people with autism is horrifying. Not just police and social services, but people, the public,” she said. “Adrian was lovely, a fantastic lad and so special to us. It’s the way other people treated him that was the problem.”

A new survey carried out by the National Autistic Society (NAS) and to be published this week to mark the launch on Monday of its new campaign, Careless, shows just how hard life can be for adults with the disability. A startling 44% of those questioned admitted they stayed indoors as much as possible for fear of being harassed. Almost a third reported having had money or possessions stolen, while 37% had been forced or manipulated into doing something they didn’t want to do by someone they thought of as a friend. Almost half (49%) of the 1,300 people surveyed reported having been abused by someone they thought of as a friend.

A consultation is under way on the government’s new criteria for eligibility for adults to access social care, and the NAS is deeply concerned that even as numbers of people being diagnosed with autism disorders rise, the legislation will see levels of support and care drop.

“It’s already incredibly patchy,” said Tom Madders, NAS campaign manager. “Only half of local authorities even offer a pathway to diagnosis. We’re starting to pick up kids who have autism a little better but for adults services are too few and far between. We hear a lot about harassment and isolation, about people being arrested when they haven’t committed a crime, but these survey results, the abuse and the neglect, still shocked us,” he said.

“People with autism can find it difficult to interpret others’ motivations, misjudge relationships, and left unsupported many are taken advantage of. Our key concern is that government plans for the care system could make this desperate situation even worse. The new criteria take away entitlement of support for people if ‘abuse has occurred or will occur’, but that is an essential criteria for vulnerable people with autism.”

Adrian Palmer was diagnosed with Asperger’s syndrome at 14 and assessed for support by social services at 18. His family knew he was at risk from the people he was spending time with and needed help with the transition to adulthood. But although the assessment found Adrian struggled with interpreting people’s motives and was easily led, the risks were not sufficient for him to receive support.

At 21, he reported being raped by a man who had befriended him. His parents appealed again to the police and social services and finally a small amount of evening support was approved. Five days later in May 2006 Adrian was killed by the man he had accused of rape. Under the government’s proposed criteria, Adrian would not have been eligible for support. West Mercia police were later found to have failed him by not properly investigating his complaints and social services apologised to his family.

His killer, Ben Murphy, 23, was sentenced to four years in prison for manslaughter and served two.

“It’s horrible to think what just a little bit of support might have done, it might have changed everything,” said Margaret Palmer. “You try your best but you need some support sometimes, not every family does but some do. We did. But the police do nothing, the social services do nothing.

“Adrian’s was a long, long story. He went through so much from when he was young, all through school people were horrible to him, teachers and pupils. It was awful to take him to school, his little heart pumping, so anxious. It would upset us terribly that no one would listen or try to understand that if you just treated him right he would blossom,” she added.

“When he was 18 he started to drink. We tried to say it’s not the way to be sociable, to make friends, but social services just said he’ll learn by his own mistakes. They advised us to make him homeless if we couldn’t cope. I was shocked. People he was mixing with were horrible, but he couldn’t see he was being manipulated.”

Another sufferer, Rose, 54, was diagnosed with autism 18 months ago. Her condition only became obvious when her husband left five years ago, forcing her to fend for herself. Her daughter, now 21, was diagnosed aged 19 and her son when he was nine. “It makes you very prone to depression,” she said. “All of us are now on medication. It makes you feel worthless when you know you don’t fit in. You feel like you’re out on a limb.” She has been targeted by people who have stolen from her and sexually abused her.

“It’s hard when you don’t know someone’s agenda. You just want to make friends but you feel out of your depth. I have battled hard to get any help at all. With my experiences over the last few years I have grown to mistrust people totally. It doesn’t seem there are many decent people left.”

Carer issues judicial review proceedings against Iain Duncan Smith

June 14, 2014

carerwatch's avatarCarerWatch Blog

A disabled grandmother and her granddaughter who provides full time care for her have this week issued judicial review proceedings in the High Court against the Secretary of State for Work and Pensions, Iain Duncan Smith, challenging the inclusion of Carer’s Allowance in the ‘benefit cap.’  The benefit cap policy has been in force across the country since September 2013.

The government has already conceded that the cap had unintended consequences for victims of domestic violence living in women’s refuges, and after the families case was heard in the Court of Appeal, Ian Duncan Smith with no fanfare amended the regulations to remove women’s refuges from the cap.

The proceedings issued this week highlight another consequence of the cap, which may surprise those who consider that the cap achieves fairness. Included in the group of families who are capped are those who receive Carer’s Allowance. To qualify for Carer’s Allowance…

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Congratulations Daniel Day Lewis, Stephen Sutton, Kelly Gallagher And Charlotte Evans!

June 14, 2014
  • Well done to Daniel Day Lewis for becoming a knight in the Queen’s Birthday Honours. He played Christy Brown, inspiration to all CPers of the 80s, in My Left Foot. This role got him the first of his three Oscars. For this, he will always be strongly associated with disability.
  • And Stephen Sutton gets a posthumous MBE. That’s just beautiful. Thoughts always with his family.
  • Kelly Gallagher and Charlotte Evans become MBEs. Fantastic.

 

I haven’t read the whole list, so if I’ve missed anyone famous and disabled/disability related, please do let me know.

http://www.bbc.co.uk/news/uk-27830525

IDS Confronted Outside Question Time Filming

June 14, 2014

Hat-tip: Chris Lawton.

 

This Is OUR England

June 13, 2014

In response to yesterday’s Sun front page, Chris Lawton has created this. He wants it shared widely!

 

this is england c lawton

Exoskeleton Used As Part Of World Cup Opening Ceremony

June 13, 2014

A cutting-edge exoskeleton designed by a Brazilian neuroscientist has been featured as part of the 2014 Fifa World Cup opening ceremony.

The paraplegic man, whose identity has been kept secret, gave the first kick to Brazuca, the official World Cup ball, by donning an Iron Man-like robotic suit controlled by brain signals.

It is being viewed as an important step in the development of a replacement to the wheelchair.

Disability Affairs correspondent Nikki Fox has been to see how patients in Britain are using new technologies to become mobile.

Panellists hijack Question Time to attack Iain Duncan Smith

June 13, 2014

Mike Sivier's avatarMike Sivier's blog

Finger-jabbing protest: Iain Duncan Smith talked over Owen Jones in his last Question Time appearance; this time the other panellists didn't give him the chance. Finger-jabbing protest: Iain Duncan Smith talked over Owen Jones in his last Question Time appearance; this time the other panellists didn’t give him the chance.

Around three-quarters of the way through tonight’s Question Time, I was ready to believe the BBC had pulled a fast one on us and we weren’t going to see Iain Duncan Smith get the well-deserved comeuppance that he has managed to avoid for so long in Parliament and media interviews.

There was plausible deniability for the BBC – the Isis crisis that has blown up in Iraq is extremely topical and feeds into nationwide feeling about the possibility of Britain going to war again in the Middle East. The debate on extremism in Birmingham schools is similarly of public interest – to a great degree because it caused an argument between Tory cabinet ministers. Those are big issues at the moment and the BBC…

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An Update From Chris Lawton On Oxfam

June 12, 2014

ESA Appeal Stats: Massive Collapse

June 12, 2014

Many thanks Benefits And Work.

There has been a massive and unprecedented fall in the number of employment and support allowance (ESA) appeals according to official figures released todayl. ESA appeals lodged in the January to March 2014 quarter were down by 89% on the same period last year.

tribunal receipts

Overall, the number of benefits appeals is 59% lower this quarter than last quarter and 79% lower than the same quarter last year. It is the most dramatic drop in appeal numbers since records began to be kept.

The huge backlog of PIP and ESA assessments has undoubtedly played a apart in the fall in appeal numbers, as has the introduction of the mandatory revision before appeal system for ESA and other benefits on 28 October 2013.

The big question now is whether appeal numbers will begin to recover as mandatory reconsiderations by the DWP are completed and claimants who are not successful move on to lodging their appeal.

However, as yet the DWP have failed to undertake any sort of research into whether the new system effectively discourages claimants from going all the way to appeal. This is in spite of request from Judge Martin, the outgoing president of the tribunals service social welfare chamber, that they do so.

Discouraging claimants may work by, for example, telephoning them as part of the process and trying to persuade them that the DWP’s decision was correct and any challenge will fail. Other tactics, such as failing to register mandatory reconsideration requests, not making appeal forms available with the mandatory reconsideration decision letters and setting strict time limits both for asking for a reconsideration and then for lodging an appeal may also have helped to cut appeal numbers.

You can download the latest statistics here.

ATOS Was Fined £30 Million For Errors In WCA Delivery

June 12, 2014

Many thanks Benefits And Work.

 

In an exclusive report, The Londoner has been told that government contractor Atos was fined £30 million for errors in its delivery of the work capability assessments.

It was announced at the time that Atos had made a “substantial financial settlement” to the DWP, for “significant quality failures” in its reports on people’s ability to work.

Until now details of the fine have been kept hush-hush to avoid embarrassing the company, which is leaving the contract in February 2015.

When asked, the DWP would only respond:

“They are paying us a financial settlement but we can’t disclose the amount for commercial reasons”.

When Atos was asked the same question: “It’s all legally bound up, I can’t comment,” was the reply from its company spokesperson.

But is the £30 million correct? “Will you tell me who gave you the figure?” was Atos’s only reply.

What Benefits and Work would like to know is: what exactly were the problems with Atos’ work? The DWP never appeared to care about the poor quality of reports before.

So, was it that Atos were putting too many people in the support group without medicals?

Were decision makers disagreeing with large numbers of Atos findings?

Or was it costing the Department too much when claimants appealed because the reports were inaccurate?

Given that claimants’ well-being is very much tied up with these assessments we have a right to know exactly what it was that was going wrong.

Read the full article in the London Evening Standard

Our thanks to JL for spotting this for us

Disabled Couple Win Glasgow Gay Bar Discrimination Case

June 12, 2014

A disabled couple have won a discrimination case against a gay bar in Glasgow.

Nathan and Robert Gale took G1 Group to court for unlawful discrimination after they were turned away from the Polo Lounge on 13 June 2013 because management claimed they had no disabled facilities.

Robert Gale has cerebral palsy and uses a wheelchair.

When the couple explained that they did not need disabled facilities they were still refused entry.

On Wednesday, Glasgow Sheriff Court ruled that G1 Group had unlawfully discriminated against the couple, who will receive £2,000 in compensation.

Speaking after the ruling, Nathan and Robert Gale said: “We are delighted with the result which sends a clear message to businesses across Scotland that disability discrimination is illegal and will not be tolerated, just as we would not accept discrimination on the basis of race or sexuality.

“We hope this ruling will encourage companies to review their policies to ensure they comply with the law and provide the welcoming environment that their disabled customers deserve.”

Nathan and Robert, who have both worked for equality charities in Scotland, went to the Polo Lounge to celebrate after attending the Scottish Charity Awards 2013 as guests of the Equality Network, the Scottish LGBT equality charity, who won the ‘Campaign of the Year’ award for equal marriage in Scotland.

The couple said it was particularly ironic and depressing to face discrimination at a gay venue on the night they had received an award for a major equality campaign.

Tim Hopkins, Director of the Equality Network, added: “We welcome this important judgement, which sends out a clear message that businesses must not discriminate, whether on grounds of disability or on any other grounds, such as sexual orientation or gender identity. This case shows that people can use the courts to stand up against discrimination and win.”

Food bank charity told to stop criticising benefit system or face shut-down – by the government

June 12, 2014

Mike Sivier's avatarMike Sivier's blog

131219foodbanks

What would you do in that situation?

It seems that food bank charity The Trussell Trust has been making too many waves around the Conservative-led Coalition government’s policies regarding benefits, social security and welfare.

Readers may recall how the charity warned that Coalition policies had created a need for a huge expansion in the number of food banks across the UK. The Tories countered this by accusing the trust of “misleading and emotionally manipulative publicity-seeking”, and also of “aggressively marketing [its] services”.

After this failed to make a dent in public opinion, the Daily Mail tried to discredit the trust by claiming it was handing out food parcels without checking whether the people claiming them were bona fide.

But it turned out that the paper’s claim of “inadequate checks on who claims the vouchers, after a reporter obtained three days’ worth of food simply by telling staff at a Citizens…

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PIP Assessment Backlog Stats: Part 2

June 12, 2014

 

Benefits And Work, many thanks for being brilliant.

More details have emerged about the backlog of work capability assessments, which currently stands at 712,000 people.

A report by the BBC quotes the DWP as saying that:

394,000 are new claimants for ESA.

234,000 are existing ESA claimants whose reassessments have been delayed.

84,000 are people still on incapacity benefit who have not yet been moved over to ESA.

The move from IB to ESA was due to have been completed in April of this year.

ESA Assessment Backlog Stats: Part 1

June 12, 2014

Many thanks to Benefits And Work.

Mike Penning told the Commons Work and Pensions committee this morning that there are now over 700,000 people waiting for a work capability assessment (WCA) and blamed Atos for the backlog according to the BBC. Meanwhile, official figures released today show that the combined number of ESA and incapacity benefit claimants has begun a sustained rise for the first time in four years.

Following evidence to the committee earlier this week in which Atos claimed that they had delivered what they were asked to by the DWP, the government now alleges that Atos failed to provide the quality of reports needed as each tries to blame the other for the huge waiting list for ESA medicals.esa count

What may prove most embarrassing for the DWP over coming months is the probability of a relentless rise in the number of claimants on ESA, a benefit whose purpose was to reduce the number of people claiming benefits as incapable of work.

As the graph on the right shows, after a sustained fall in numbers since August 2009, the combined total of ESA/IB claimants is now rising steadily, month by month. Although the figures from November onwards are estimates, it seems highly unlikely that the trend will reverse significantly before a new provider replaces Atos next year. Even then it is likely to take many months before any significant reduction is made in the backlog of medicals.

You can watch this morning’s meeting on parliament TV (if you can get it to work, which we couldn’t)

Chris Lawton’s Letter To Charity Commission

June 11, 2014

In response to the post reblogged below, Chris Lawton wrote this. He has allowed me to share it, and you to use it as a template. Please share widely.

To whom it may concern,

I am writing to say that I support the Oxfam campaign poster which Conservative MP Conor Burns is objecting to and am asking that any complaint against this is ignored.

The poster contained 100% fact and truth and there needs to be more of it!

Please disregard any complaints with regards this poster!

Regards,

Tory policies cause poverty and trying to discredit Oxfam won’t mitigate that truth

June 11, 2014

Kitty S Jones's avatarPolitics and Insights

Oxfam posted this image on Twitter as part of a campaign on falling living standards and poverty in the UK. Conservative MP’s are angry about it and regard it as “politically biased” and controversial.
'Lifting the lid on austerity Britain reveals a perfect storm - and it's forcing more and more people into poverty' tweeted Oxfam
Lifting the lid on austerity Britain reveals a perfect storm – and it’s forcing more and more people into poverty.
Tory MPs have reported Oxfam to the Charity Watchdog for campaigning against poverty. I guess the Joseph Rowntree Foundation had better watch it, then. What next, will they be reporting the NSPCC for campaigning for children’s welfare?
The picture is part of a bigger campaign on poverty in the UK, and was posted on Twitter. Previously OxfamGB had invited people to hear how “we investigate the reasons why so many people are turning to food banks in Britain 2014”.
Another OxfamGB tweet said: “We think all political parties need to commit to action on food…

View original post 1,731 more words

DWP Chaos Caused By Them Misreading Date Says Judge Robert Martin

June 11, 2014

Many thanks to the brilliant Benefits And Work.

A massive surge in appeals , increased costs and weekly parliamentary questions about tribunal waiting times were all caused by the DWP misreading a date in its own legislation and then being too embarrassed to admit it, a top judge has revealed.

Judge Robert Martin, writing in the April edition of the Judicial Information Bulletin, which goes out to all tribunal members, disclosed that the DWP panicked because they believed that from October 2013 they would have to respond to all appeals lodged by benefits claimants within 28 calendar days. There had previously been no time limit.

In fact, the legislation which introduced the new ‘mandatory reconsideration and direct lodgement of appeals’ system gave the DWP a year’s grace after its introduction for most benefits, before they had to comply with the time limit. But, says Judge Martin in a comment dripping with irony, ‘Through the kind of error anyone might make, DWP misread the commencement date’.

Believing that the time-limit applied from October 2013 rather than 2014, the DWP embarked on a massive campaign to reduce a backlog of 110,00 appeals that had been sent to the DWP by claimants but to which the DWP had yet to respond.

When they finally realised their mistake, to avoid the risk of “significant reputational damage’ the DWP agreed with the tribunals service that ‘they would act as though the start-date had, in fact, been advanced by a year’.

Thousands of additional appeals for which no extra staff provision had been made were hurried through to the tribunals service each month. As a result, according to Judge Martin:

“Throughout the first half of 2013, the Tribunal faced considerable political strain. Parliamentary questions were tabled weekly highlighting the growing waiting times for appeals to be heard and the mounting expenditure. The delay caused hardship for claimants and forensic difficulties for judges and members in trying to delve back in time to the date of the decision under appeal.”

This massive increase in appeals – a record of over 50,000 were cleared in just one month in 2013 – has now been followed by a huge drop in numbers, with an unprecedented low of just 8,775 appeals in March 2014.

In his article, Dark Matters, Judge Martin explores the many possible reasons for this sudden drop in appeals and, perhaps because of his imminent retirement as President of the social entitlement chamber, he allows his disgust with the DWP to shine like a beacon.

Judge Martin’s article, ‘Dark matter’ can be downloaded from the Rightsnet discussion forum.

Visually Impaired Veterans Commemorate WWII Veteran with New Summerhouse & Sensory Garden

June 10, 2014

A press release:

A new summer house and sensory garden for visually impaired veterans has been opened in West Lothian.

Located at the Scottish War Blinded Linburn Centre, the summerhouse is surrounded by tranquil gardens, a wide range of aroma-therapeutic plants and subtle water features to accent the movement of the Lin Burn encouraging relaxation, recreation and exploration of the senses and environment.

Linburn Centre Manager Sheila Mutch said:

“Our members are now able to enjoy this very peaceful and tranquil area along the Lin Burn. We are looking forward to spending time there over the summer months and seeing the garden area mature and develop hopefully attracting some local wildlife.”

The Summer House is dedicated to Alan Turnham who served in the Royal Signals Regiment in Italy and Sicily during World War II. A commemorative plaque has been installed in memory with a special Braille descriptor.

The Turnham family donated funds to support its construction and daughter, Sally Turnham, officially opened the summerhouse at an event with Scottish War Blinded members and staff.

Miss Turnham said:

“The opening of the summerhouse was very nicely done. The staff I liaised with at Scottish War Blinded completely understood our wish to donate funds towards a specific project. My father loved his garden, spending many happy hours there during the summer months, so a summerhouse seemed a fitting tribute.

“Dad loved living in Scotland and when asked about leaving money to a charity he immediately nominated Scottish War Blinded. He developed a visual impairment latterly and could appreciate living with limited vision.”

Small ‘Gardens for the Blind’, consisting of aroma-therapeutic plants, braille descriptors and tactile features, were first introduced in UK public parks during the Horticultural Therapy Movement in the 1970s.

“I’m Blind. I Don’t Need A Wheelchair.”

June 10, 2014

I am sharing this because I think the audio clip in the link is hilarious!

Blind author Red Szell bemoans how airports and train stations offer him assistance more appropriate for someone with another type of disability.

“It’s bad enough losing one area of independence without having another snatched away,” says Red Szell.

He complains that, when travelling, “well-meaning souls” provide the wrong kind of help for him. Often staff arrange assistance more appropriate for someone who is mobility impaired not visually impaired, and if you don’t book ahead this can often take longer as it involves getting equipment or vehicles.

“Recently I turned up to an airport having navigated my way there unaided, on time, and with a rucksack full of climbing gear ready to tackle an Italian rock face.

“All I wanted was a bit of guidance through the gloom to the departure gate – but oh no, instead my arrival initiated ‘a procedure’.”

Szell was taken to a seat and then asked to wait.

“Resistance was futile,” he says. “I had entered the Health and Safety zone.”

Forty minutes later, with his flight being called for the final time, a wheelchair was produced and he only just made it on board before the doors were closed.

But it’s not just airports, says Szell, train stations can sometimes have the same procedures.

At one station the guard asked whether he was travelling alone and on replying “yes” Szell was then held there while the guard radioed for help from a colleague.

The reason? There was, the guard said, a danger that he may fall down the gap between the train and the platform. When Szell explained he was in a hurry the guard told him he was unable to assist because he must not leave his post.

“The minutes ticked by and I considered vaulting the barrier,” says Szell. “The train left without me.”

An electric buggy then pulled up next to him, waited an hour for the next train, and carried Szell just 15m so he could board.

They said the buggy had been summoned to “facilitate” the journey, says Szell.

“I shouldn’t be surprised,” he says. “It’s the same impulse that has hosts at parties steering me to the nearest chair. I don’t want to sound churlish, an offer of genuine assistance is a joy to receive but being subjected to a one-size-fits-all risk assessment solution is like being labelled a liability for daring to set foot outdoors.

“I know the airport and railway staff have a duty of care and the host has every right to take charge at his or her party, but I am the one living with my condition and a good doctor always talks to his patient before dispensing treatment.”

Train stations and airports advise disabled people to book assistance in advance of their journey to avoid complications. For trains it is advised to book 24 hours ahead, and airports will require 48 hours’ notice.

Red Szell’s viewpoint piece was broadcast on the latest edition of In Touch, the long-running programme for visually impaired people which airs every Tuesday at 20:40.

DWP Overturns More Than Half Of Its Own ‘Mandatory Reconsideration’ Decisions

June 10, 2014

The DWP is overturning more than half of its own decisions in relation to some benefits. This has been revealed by Judge Robert Martin the outgoing president of the social entitlement chamber which deals with benefits tribunals. The DWP itself has yet to publish any statistics about the ‘mandatory reconsideration before appeal’ system introduced last year.

‘Mandatory reconsideration before appeal’ was introduced for personal independence payment (PIP) and universal credit (UC) from April 2013 and, for other benefits, for decisions made on or after 28 October 2013. It means that before a claimant can appeal a decision they have to ask for it to be looked at again by the DWP. Only once they receive written notification of the result of the reconsideration can they lodge an appeal, if they are unhappy with the revised decision.

The figures for reconsideration success were given by Judge Martin in the April edition of the Judicial Information Bulletin, which goes out to all tribunal members.

According to the judge, by 21st February 2014 the DWP had received 82,798 mandatory reconsideration requests and made a decision in 70% of cases, with decisions taking on average 13 days from the date they were received.

DLA decisions overturned 55.9%

ESA decisions overturned 23.0%

JSA decisions overturned 30.1

PIP decisions overturned 13.9%

UC decisions overturned 71.1%

It is extraordinary that the DWP is overturning a massive 71% of its own decisions in relation to UC, but at least they have the excuse that it’s a new benefit. But to be getting it wrong in more than half of all DLA decisions is even more astonishing.

Atos pulled out of the contract for carrying out DLA medicals, other than terminal illness cases, last year. Since then decision makers have been left to look up the effects of conditions in guidance issued by the DWP – and available in the members’ area of Benefits and Work site – or on the internet.

This may go some way to explaining what is such a shameful level of error in DLA decision making. But it does not in any way excuse it.

For the moment then, it seems that even for ESA challenges – with a success rate of 23% – there is a reasonable chance of getting the decision overturned prior to a tribunal hearing.

Judge Martin’s article, ‘Dark matter’ can be downloaded from the Rightsnet discussion forum.

Does DWP Believe Universal Credit Is Dead?

June 10, 2014

Many thanks to the brilliant Benefits And Work.

Evidence has emerged that the DWP believes that universal credit (UC) is dead. Officially the department insists that ‘the vast majority’ of around 7 million recipients will move onto the benefit during 2016-17. Privately, however, the department is no longer predicting that there will be any universal credit appeals between now and 2019.

The revelation was made in the April edition of the Judicial Information Bulletin –which goes out to all tribunal members – by Judge Robert Martin, the outgoing president of the social entitlement chamber which deals with benefits tribunals.

Several times a year the DWP provides the tribunals service with estimates of how many appeals are likely to be generated in the next five years. This is vital for the tribunals service, who need to be able to plan how many staff to recruit and how many venues to provide for hearings. The DWP give estimates for each different type of benefit, as tribunals may be constituted differently depending on the benefit involved.

The Judge reveals that in its April 2013 forecast the DWP estimated that there would be 1,355 UC appeals in 2013-14 and 77,926 UC appeals in 2014-15. In fact, by the end of March 2014, due to the tiny number of claimants who have been able to claim UC, there had been just three appeals.

The DWP made further forecasts in December 2013 and most recently in April 2014. In the last of these the DWP estimated that there would be:

393,000 appeals in 2014-15

456,000 appeals in 2015-16

622,000 appeals in 2016-17

553,000 appeals in 2017-18

340,000 appeals in 2018-19

However, Judge Martin reveals that none of these appeals are now predicted by the DWP to be for universal credit.

It is not credible that the DWP now imagines that no claimant of UC will appeal in the next five years. The only reasonable explanation, therefore, is that the DWP now expect there to be so few people receiving the benefit that the number of appeals generated will be too small to make provision for.

In other words, when planning for the future in the real world rather than the world of departmental spin and propaganda, the DWP are making no provision whatsoever for UC.

The DWP seem unlikely to be grateful to Judge Martin for his disclosure, one of several in the article ‘Dark matter’ which can be downloaded from the Rightsnet discussion forum

ATOS: Other Firms Will Find Recruiting Staff Hard

June 10, 2014

Atos, the private company quitting its contract to provide assessments for disability claimants, warned that its successor will fare just as badly unless the government improves the system it has to run.

Atos chiefs complained that it and its staff had suffered a public “vilification” simply for carrying out what was asked of it by ministers and suggested other companies would find it hard to recruit staff unless changes were made.

Ministers announced in March that the contract to deliver work capability assessments was being terminated early by mutual consent, amid criticism of delays and the number of disabled people apparently being wrongly judged fit to work.

While campaigners welcomed Atos’s withdrawal, they also said the change should be used to “move away from a fundamentally flawed system”.

That was a stance echoed by senior Atos figures when they were questioned by MPs over the issues. Its senior vice-president, Lisa Coleman, told the Commons’ work and pensions select committee it was “difficult to see” any improvements unless the government accepted its own policy was part of the problem.

While the firm had not got everything right, it had become a “lightning rod” for public anger over the system itself, she said.

“Unless something is done around educating people what the actual operational reality of that policy really is and what they mean potentially for individuals going through that then I find it difficult to see that actually just changing the supplier will change things.

“I think it would be a real shame if moving to a new supplier wasn’t taken as an opportunity to do things in a different way.

“We often find that when somebody makes a comment that Atos has done an assessment incorrectly, actually, against the policy, what has happened has been right.

“It is very difficult to understand that somebody with a very challenging or quite a difficult condition doesn’t go through the process as you might expect.

“It is the decision-maker in the department who makes that decision and we would look for a lot more transparency around that whole process including ‘what do these descriptors mean, what is the potential outcome for people with some quite difficult conditions?’

“It is massively over-simplistic to say that a new provider is going to fix all the issues. There are other things that need to happen.”

She accepted that the inability to make sufficient profit was a factor in the decision to pull out but insisted there were a variety of factors and money “was not the overriding one”.

Helen Hall, head of communications and customer relations, pointed to the high turnover of medical assessment staff as something any future provider would struggle with.

More than a quarter are quitting at present – many within the first six months – in the face of public anger directed at them, she said.

“They are professional trained people. They care about the job they do. They are doing a very good job of applying the legislation the government has laid out and despite that they are being vilified for it,” she said.

“The level of intimidation, the level of negative coverage about professional people … I’m not sure that’s an issue that can be resolved by a new provider just throwing money at that.”

Claimants “read the media stories, they listen to the public rhetoric … they might come into that assessment feeling that the assessor they are going to see is someone who will treat them with contempt, who can’t be trusted, who isn’t trained”, she said.

“They might have to come into an assessment centre and walk past protesters, they might sit opposite someone in the waiting room with an ‘Atos Kills’ T-shirt.

“What we have seen quite often now is people coming in for an assessment and they are actually saying at the end of it ‘you’ve just been recorded on my iPhone and I am going to expose you on the internet’.

“If you put all those together and imagine how both those parties are feeling, that environment is something that has to change and I personally don’t think the private provider by themselves can achieve that level of change.”

Breadline Kids

June 10, 2014

I’ve just watched the Dispatches documentary Breadline Kids.

This is a short clip of Becky, 14, who featured in the film.

 

 

If you missed the whole film and would like to watch it, you can find it here.

Top Judge: Virtual Collapse Of WCA Process

June 9, 2014

With many thanks to the brilliant Benefits And Work.

 

Judge Robert Martin, the outgoing president of the social entitlement chamber which deals with benefits tribunals, has claimed that the work capability assessment (WCA) process has virtually collapsed and that DLA claimants are having their awards extended, rather than looked at again, as the DWP goes into a welfare reform induced meltdown.

The judge was writing his final article before retiring, in the April edition of the Judicial Information Bulletin which goes out to all tribunal members . As a result, he has taken the opportunity to make a number of allegations and disclosures about the DWP that might be regarded as astonishingly forthright in a serving tribunal president.

In the article, Judge Martin tries to get to the bottom of why the tribunal service went from its highest ever number of cases heard in a month – over 50,000 – in July 2013, to a record low of just 8,775 in March 2014.

He makes it clear that he blames the DWP for the difficulties caused by this wild fluctuation in workload. The judge appears particularly angry because the tribunals service had taken on a large number of new staff after the DWP predicted a prolonged period of extra appeals.

Judge Martin is in no doubt that the biggest single cause of the drop in appeal numbers is a huge reduction in the number of WCAs being carried out.

He explains that in July 2013 Lord Freud announced that, due to a reduction in the quality of written reports, all Atos health professionals were to be retrained.

Initially, the DWP warned the tribunals service that there was likely to be an increase in the number of appeals as previous assessments were reworked and then challenged by unsuccessful claimants. However, at the same time the number of assessments carried out by Atos dropped from 200,000 to 100,000 per month.

As a result the DWP changed its advice, saying that there would be a drop of 9,500 appeals from September to December 2013 whilst remedial measures were put in place. Following this there would be a big surge of appeals as Atos regained its former rate of assessments and worked on the backlog caused by the slowdown.

In fact, the recovery in the number of appeals has still not happened and, as Benefits and Work exclusively revealed, the DWP stopped referring most existing ESA claimants to Atos for reassessment from late January 2013. In addition, Judge Martin claims that:

‘Anecdotally, it appeared that an increasing proportion of ESA claimants both on new claims and IB-ESA reassessments were simply being assigned to the support group without a face to face assessment.’

Judge Martin concludes that:

‘The virtual collapse of the WCA process is the biggest single factor in the decline of the appeals intake.’

However, the judge lists many other important factors, including the extremely small number of universal credit awards and the botched and halting introduction of personal independence payment (PIP).

The judge reveals that:

‘As late as June 2013, the DWP was forecasting that HMCTS would receive over 40,000 PIP appeals by the end of March 2014. The actual PIP receipts by the end of March were just over 1,000.’

Judge Martin also has deep suspicions about what is happening in relation to disability living allowance ( DLA). He explains that the number of DLA appeals in March 2014 dropped by 80% compared to March 2013, from 5,568 down to 1,202.

He argues that this drop cannot be explained simply by the introduction of PIP, especially given that reassessment of DLA awards under the PIP rules has only been introduced in 30% of the country and that DLA claims do not require a medical assessment from Atos or Capita.

‘It becomes even more curious’, he suggests, when you realise that the DWP has recently ‘revised the level of DLA appeals expected in 2014-15 – upwards from 29,200 to 33,150.’

Judge Martin points to a possible explanation. The PIP regulations introduced a power for the DWP to extend DLA awards that were about to run out, even if the claimant is not about to be transferred to PIP. The judge claims that:

‘There is anecdotal evidence from welfare rights advisers that claimants whose DLA award is running out have simply received an extension. DWP has not disclosed the extent to which this may be happening’

Whatever the reason for the fall in the number of appeals, there seems little doubt that the DWP have made an enemy out of a man who knows – or suspects – where many of its skeletons are buried. They must be hoping very much that nobody goes and digs them up.
Judge Martin’s article, ‘Dark matter’ can be downloaded from the Rightsnet discussion forum.

Collin Brewer Dies

June 9, 2014

I’m not going to lie and say I liked him. However, sudden death is never a pleasant thing.

A colleague said Collin Brewer should be remembered for the positive work he carried out as a councillor

A former councillor who said disabled children should be “put down” has died.

Collin Brewer made the comments in 2011 and stood down from Cornwall Council in February 2013. He was then re-elected in May 2013, before resigning for a second time in July.

Mr Brewer, who was in his late 60s, was an independent councillor for Wadebridge East.

A colleague said he should be remembered for the positive work he had carried out for more than 25 years.

‘Highly regarded’

Jeremy Rowe, Liberal Democrat councillor for St Issey and St Tudy, said: “A lot of people will remember Collin because of what happened in the past year, but remember him for the 27 years of good hard work he put in for his area.

“He was highly regarded in Wadebridge and the surrounding area.”

Tony Rush, the mayor of Wadebridge, said: “I have known Collin for more years than I care to remember and found him to always be available to help or to do whatever he could for the good of the people in the area that he served as a councillor.

“For Collin to be taken so soon after retiring from public office is a shock to all concerned.”

In 2011, Mr Brewer told a charity worker “disabled children cost the council too much money and should be put down”.

He apologised after those comments were raised in February 2013 and resigned. He said his remarks had been intended to stir up debate.

The cause of the former councillor’s death is not yet known.

Travellers Reminded To Declare Diabetes

June 9, 2014

A press release:

 

According to figures released earlier this year,[1] the number of people diagnosed with diabetes in the UK has increased to more than 3.2 million, excluding a further estimated 850,000 people undiagnosed with Type 2 of the condition, the biggest increase in a single year since 2008.

In Diabetes Awareness Week,[2] MedicalTravelCompared.co.uk, providers of the stand-alone travel insurance comparison site for people with pre-existing conditions, is reminding people living with diabetes to make certain that their travel insurance adequately covers them by declaring their condition before they travel.

Head of Marketing for Medical Travel Compared, Vicki Moses, said: “As diabetes is a common life-long health condition it can be easy for those living with diabetes, who are used to managing their condition daily, to forget to notify their travel insurance company of it.

“Most travel insurance policies exclude pre-existing medical conditions, like diabetes, so it is essential that you fully disclose diabetes, along with all your medical conditions, even if the insurer doesn’t ask about it specifically.

“You can then make sure you get a policy that includes cover for diabetes so it will be possible to claim for lost or stolen medication like metformin, insulin or other prescribed drugs that you rely on to keep your condition stable, so you can continue your holiday with little disruption, if the unthinkable happens.
more follows…

2./

“Also, the cancellation and emergency medical assistance section of policies that include diabetes will often extend to unplanned complications, so you would be able to claim for out of pocket expenses if you’re unfit to travel or require hospital treatment abroad. Obviously, this is subject to the policy terms and conditions, but will give travelers a little more peace of mind.”
Diabetes often comes with many associated medical conditions, such as poor circulation, leg and foot ulcers, high blood pressure and cholesterol, and holiday-makers are reminded how important it is to tell potential travel insurers about every past and present condition to ensure appropriate cover.

MedicalTravelCompared.co.uk is a specialist travel insurance comparison website created specifically for those with pre-existing medical conditions and the over 65s, and offers easy access to a large choice of specialist travel insurance providers.

Vicki Moses continued: “Properly managed, diabetes should not be a barrier to travelling the world and we’re able to offer specialist insurers that will provide cover for people with both Type 1 and Type 2 diabetes.

“As long as travelers take the right preparations to minimise any potential problems abroad such as: carrying diabetes ID and a letter from your doctor if you need insulin or an injectable medication, considering the effect any changes in time zones will have on the management of your condition, and taking twice your normal quantity of medical supplies split into separate bags, then there is no reason why diabetes should get in the way of you having a good time.”

After just one simple set of medical screening questions, http://www.MedicalTravelCompared.co.uk offers a list of travel insurance policies and their premiums to cover the relevant medical conditions.

For more information about MedicalTravelCompared.com and to use their comparison service visit http://www.MedicalTravelCompared.co.uk

CQC Report: NHS Fails Disabled And Sick Teens As Adults

June 9, 2014

The NHS is failing disabled and seriously ill teenagers by depriving them of vital services such as pain relief when they become adults, the service’s watchdog warns today.

In a highly critical report published on Monday the Care Quality Commission (CQC) castigates doctors and hospitals for leaving vulnerable young people confused and stressed when they start being cared for as adults by different health professionals.

Too many of the 40,000 under-18s in England with complex and challenging health needs end up losing access to key services they have relied on since childhood – such as help with their mobility, breathing and swallowing – as they undergo what can be a very difficult “transition” to being treated as adults, the CQC says.

They include young people with sometimes profound physical disabilities, chronic conditions such as diabetes and life-threatening illnesses such as cystic fibrosis.

Prof Steve Field, the CQC’s chief inspector of primary medical services and integrated care, said: “This report describes a health and social-care system that is not working, that is letting down desperately ill youngsters at a critical time in their lives. We have put the interests of a system that is no longer fit for purpose above the interests of the people it is supposed to serve.

“In an age where people can receive organ transplants, keyhole surgeries and targeted cancer treatments, it’s really disappointing that the basic care needs of many young people with physical disabilities and other long-term health needs are not being met,” added Field, a GP and ex-chair of the Royal College of GPs.

The CQC’s review of care for such young people before, during and after the switch to adult services found a host of problems. They included that “Some children‘s health or therapy services stopped at 16 but there was no adult service available until they were 18. This resulted in essential care being effectively withdrawn,” the report says.

The review, based on the experience of 180 young people aged 14 to 25 or their parents, found that “from the perspective of many families we spoke to, transition through health was un-coordinated and often unexpected. For some, it caused great stress and anxiety.”

In addition, existing national guidance on how to support them is often ignored or doctors are unaware of it. Field also found “inconsistent and often poor information and preparation from children’s services for young people and their parents about the changes they can expect as they move into adult services. This led to a lack of understanding of the process of transition.”

One parent summed up their child’s transfer to adult medical services by saying: “From the pond, you are picked up and put in the sea.”

Field said that one young woman he had spoken to had felt so badly treated by adult services that she stopped using them. “As a child she was being treated as a human being whereas when she was transferred to adult services she felt the attitude towards her was poor and patronising,” he said. Too many hospital doctors’ attitudes towards young people who had transferred into their care was “outdated and paternalistic”, he said.

Anna Bird, head of policy and research at Scope, the disability charity, said: “Many young disabled people find that their quality of life can ‘nose-dive’ when they move from childhood services into the adult world. They struggle to get their health needs met but also to find work, to continue their education and to find a suitable place to live.”

Prof Gillian Leng, the deputy chief executive of the National Institute for Health and Care Excellence (Nice), said that “for many young people on the cusp of adulthood, moving between health and social-care services can be a tumultuous and stressful time. A poor transition between child and adult services can have a profound and long-lasting negative impact on a person’s life.

“The last thing we want is for young people to fall between the gap in child and adult services and not get the support or care they need.” Her organisation is drawing up new guidance to help remedy the problems identified.

Field stressed that the CQC had uncovered some examples of excellent care. However, the NHS needed to undertake urgent system-wide change, with GPs playing a key role in smoothing the transition process, he said.

If DWP lawyers don’t attend tribunals it means benefit claimants AREN’T cheating, Daily Mail!

June 9, 2014

Mike Sivier's avatarMike Sivier's blog

Daily Fail Logo

The Fail has struck again with a comically inaccurate piece about benefit appeal tribunals.

“Benefits claimants cheats (sic) are able to keep money they are not entitled to because government officials fail to turn up to legal hearings,” thundered the piece by MailOnline political editor Matt Chorley, who should know better – both in terms of grammar and logic.

“The Department for Work and Pensions sent lawyers to just four per cent of tribunals held last year to rule on decisions to cut benefits.

“It means that in many cases people are able to successfully argue in favour of keeping their money, because the government has failed to turn up to challenge it.”

No – that’s not what it means.

If the DWP has made a decision not to send lawyers to defend the cancellation of a claimant’s benefit, it means they expect the facts to speak for themselves…

View original post 524 more words

A Letter Provided By A DWP Whistleblower

June 9, 2014

Thanks to ATOS Miracles on Facebook.

 

dwpwhistleblower

Committee Announces Evidence Sessions For Inquiry Into ESA And WCA

June 9, 2014

The Work and Pensions Committee has today announced the final oral evidence sessions for its inquiry into Employment and Support Allowance and Work Capability Assessments

 

Fourth Session

Witnesses

Monday 9 June 2014, at 4.30pm, Wilson Room, Portcullis House

  • Lisa Coleman, Senior Vice President, Health Market, Atos
  • Dr Angela Graham, Clinical Director, Atos Healthcare
  • Helen Hall, Head of Communications and Customer Relations, Atos Healthcare

Purpose of the meeting

The session will consider

  • Atos’s role in the process before the face to face assessment and claimants’ experience of the process
  • The design and delivery of the WCA
  • The contract for delivering the WCA, including the relationship between quality and productivity, and Atos’s early exit from the contract
  • The ESA decision-making process, including outcomes and appeals
    Future delivery of the WCA

Final session

Witnesses

Wednesday 11 June 2014, at 9.30am, Grimond Room

Department for Work and Pensions

  • Rt Hon Mike Penning MP, Minister of State for Disabled People
  • Jason Feeney CBE, Benefits Director
  • James Bolton, Deputy Director, Health and Wellbeing Directorate
  • Iain Walsh, Deputy Director, Working Age Benefits Division

Purpose of the session

The session will consider

  • The effectiveness of the WCA, including the findings of the Evidence Based Review
  • Key concerns about the delivery of the WCA by Atos, and how these issues may be resolved with the new provider
  • The ESA decision-making process
  • ESA outcomes and reassessments
  • Mandatory reconsideration and appeals
  • The interaction between ESA and Universal Credit

“The dust in the corner” – Justice for Nico

June 9, 2014

Oxfordshire Family Support Network's avatarA Bit Missing

Quite some time ago now I was told about another young man who died in Oxfordshire. I’ve mentioned this other tragic death in previous blogs and raised a question about it to Katrina Percy (CEO of Southern Health) at the Oxfordshire Learning Disability Partnership Board meeting a couple of months ago. I haven’t written in any detail because his mother, who I’d been in touch with through social media couldn’t face sharing his story. So battered and beaten by the experience and trauma, not only of his death but the way they have been treated by the organisation in charge of his care was she that she didn’t trust anyone and couldn’t bear to speak about it.

Over the last year she’s read the accounts of Connor’s death. She’d read Sara’s blog (which left her “in bits”). She’s seen how others have rallied to get justice for LB while at…

View original post 2,743 more words

Will Question Time’s panel do what Parliament can’t – and hold Iain Duncan Smith to account?

June 8, 2014

Mike Sivier's avatarMike Sivier's blog

140428IDSshrug

Picture the scene if you can: It’s shortly after 11.35pm on Thursday (June 5) and all my inboxes are suddenly overflowing – with the same message: Iain Duncan Smith will be on Question Time next week.

The implication was that there is an opportunity here – to show the public the homicidal – if not genocidal – nature of the changes to the benefit system this man mockingly describes as “welfare reforms”.

We were given the name of only one other panellist who will be appearing in the June 12 show, broadcast from King’s Lynn: Private Eye editor Ian Hislop. He is certainly the kind of man who should relish a chance to take the politician we call RTU (Returned To Unit) down a peg or two – in fact the Eye has run articles on DWP insanity fairly regularly over the past two decades at least.

Personally I’d like to…

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A Very Moving Update From Sanaz Raji

June 7, 2014

Spotted on Facebook.

 

My birthday is tomorrow. I’m not in any celebratory mood, but rather consumed thinking about how I will be surviving the next few months. If you could please donate any amount, this would ensure that I’m not left destitute come the end of the month and that I have enough money to take care of immigration matters.

Please share

http://www.gofundme.com/a0nqa8?preview=1

Dear Supporters: During the past 6 months, Justice4Sanaz have recieved…
gofundme.com

BREAKING NEWS: Second Court Case On ILF Closure

June 6, 2014

With many thanks to DPAC.

Judicial review launched of repeat DWP decision to close the Independent Living Fund

The Department of Work and Pensions is facing a judicial review challenge by a group of disabled people of the decision of Minister for Disabled People Mike Penning to close the Independent Living Fund (ILF) in June 2015, taken just weeks after the Court of Appeal quashed a previous, almost identical decision as being unlawful.  ILF provides vital support and funding to some 18,000 severely disabled people in the UK to enable them to live independent and fulfilling lives.  To be eligible people must already receive a substantial care package from local authority social services, but ILF funding provides a top-up for those with particularly high support needs. The ILF system was set up in 1988 in recognition of the fact that more severely disabled people are at high risk of social exclusion and face particular barriers to independent living and working, but their needs in this regard were not adequately addressed by council provision with its focus on meeting basic needs.   The claimants, represented by Deighton Pierce Glynn and Scott-Moncrieff & Associates, fear that loss of ILF support would threaten their right to live with dignity, and they may be forced into residential care or lose their ability to participate in work and everyday activities on an equal footing with other people.

The Court of Appeal had ruled in November 2013 that the previous closure decision had breached the public sector equality duty in the Equality Act because the Minister had not been given adequate information to be able to properly assess the practical effect of closure on the particular needs of ILF users and their ability to live independently.

However following the new closure decision announced on 6th March 2014, the DWP admitted that in considering the proposal once again it had not consulted with any organisations or individuals outside of Government. It had not gathered any additional information from local authorities or other sources about what level or type of support former ILF users would receive from social services once the ILF element was removed and how many people would be likely to go into residential care or lose their ability to work or study.

The new legal challenge is on the same basis as the first that once again the Minister had not discharged the public sector equality duty because he did not have adequate information to be able to properly understand what the impact of closure would be on the particular people affected. This made it impossible to properly weigh up the pros and cons of the proposal with the necessary focus on removing disadvantages for disabled people, meeting their needs, increasing participation in public life and advancing equality that the law requires in all decisions by Government.

The Claimants are asking the court to again quash the decision to close the Fund.

Head of MPA to MPs “I am not actually sure that DWP has set out Universal Credit budget at the moment”.

June 6, 2014

Brian Wernham's avatarbrianwernham

Jokers

Heads of NAO and MPA talk about the finer points
of project management auditing – MPs watch

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011313_1046_50shockingf3.jpg

Today the Head of the Major Projects Authority (MPA), a unit in the Cabinet Office, gave evidence to Margaret Hodge MP and the powerful Public Accounts Committee.

He revealed that the ‘reset’ Universal Credit Project budget is still unagreed, confirming my observation 2 weeks ago that DWP have not yet secured the agreement of HM Treasury to proceed with the project at the scale needed to meet the declared 2017 deadline for 15 million people in 9 million households to be paid under the new scheme.

MPs on the Work and Pensions Committee were promised that the ‘reset’ business case would be approved by Treasury ‘mid-April’.  DWP was so sure of this that the promise was quoted in the MPs report published on the 2nd April:

mid-April

Today the Head of the Major Project Authority (MPA), John Manzoni, in the last two…

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PIP Stats: Disability Rights UK Respond

June 6, 2014

The Personal Independence Payment statistics issued today show that the disability benefit system in the UK has broken down.

Disabled people are waiting over 6 months for their PIP claims to be assessed with 75% of claimants not yet having received any decision on their claim.

Excluding those who are terminally ill, of those disabled people who have actually received a decision over 50% have not been made any award at all.

In terms of action we see measures that make things worse, like the automated message on the PIP telephone helpline advising callers not to hold on if they have not yet been waiting six months for a decision.

The current situation is causing financial hardship, despair and frustration to nearly 300,000 disabled people.

Disability Rights UK demands an end to the further roll-out of PIP and urgent action be taken to reduce the scandalous backlog of PIP claims.

Father Threatens To ‘Blow Up’ Home Over #BedroomTax

June 5, 2014

Many thanks to the Welfare News Service.

 

A father of four children threatened to ‘blow up’ his own home yesterday (4 June 2014) as he faced eviction due to the government’s controversial ‘bedroom tax’ housing policy.

52 year-old Michael Hilton from Church, East Lancashire, had been living in his social home for 30 years before being ‘hounded’ by his social landlord, Hyndburn Homes, to cover the shortfall in his rent since September 2013.

Mr Hilton was told that he would have to contribute toward the cost of his rent because a spare bedroom in his home was not being used, even though his children sometimes occupied the bedroom when they came to visit.

Mr Hilton had been stockpiling gas canisters at his home in Church, East Lancashire, and warned bailiffs that there would be an ‘explosion’ if they tried to enter.

Bailiffs reported the incident to the police who arrived at the property in Church with six cars, two police vans, police dogs, a riot van and two fire engines.

Mr Hilton’s distressed wife and son, Johnny, looked from behind police barriers as Michael barricaded himself in the property and refused to leave.

Onlookers soon gathered at the scene with one witness saying: “It’s the government this is. They are putting these taxes on vulnerable and poor people and look what happens.”

Another onlooker told the Lancashire Telegraph: “It’s been his home for 30 years. It’s a bit extreme but no-one would want to be thrown out like that”.

A police negotiator was sent to the house to try to convince Mr Hilton to leave the property voluntarily. However, police say that a decision was eventually reached to force entry into the house and detain Mr Hilton.

Mr Hilton’s 29 year-old son Johnny, said: “I knew something like this was going to happen. He has been hounded to pay bedroom tax since September last year.

“My dad has four children altogether and, sometimes, they stay here with him.

“In the eyes of the council, he has a spare room but, from his point of view, that’s a bedroom for his kids.

“I have even tried to speak to the council myself and try to sort it out. I called them last week and told them that my dad has mental health problems. He thinks he’s being persecuted.”

“He has been driven to this and I think that he feels like he is making a stand for everyone that has been faced with the unfair bedroom tax. I am very worried about him.”

Nigel Fenton, managing director of Hyndburn Homes, said:

“Any repossession of a tenant’s home is always an absolute last resort and would only happen after we have repeatedly attempted to resolve the issues and help them.

“We always try to support our tenants and assist them in any way that we can. We would always urge our tenants to discuss problems with us so that we can provide our support.

“Staff from Hyndburn Homes were at the scene and worked with the emergency services to ensure the safety of residents in the area.

“We have been made aware of gas cylinders at the rear of the property and we have been working with officers from the council to resolve this matter.”

A spokesman for Lancashire Police said:

“We were very concerned as there was a suggestion that there was petrol inside the property and we had also heard reports that he had a large number of gas canisters with him.

“We sent a negotiator in to reason with him but eventually, a decision was taken to enter the house and detain the man.”

PIP Stats To Date

June 5, 2014

This link has a collection of DWP statistics on PIP claims, for anyone who may be interested.

Thalidomiders Launch New Legal Action

June 5, 2014

People affected by the drug Thalidomide are taking new legal action to try to get compensation from the manufacturer and distributor.

The High Court action has been launched by eight people whose mothers took the anti-morning sickness drug in the late 1950s and 60s.

Clive Coleman reports.

My Last Summer: A Review

June 5, 2014

Yesterday, I watched My Last Summer. This programme explores what happens when Big Brother meets terminal illness. Five strangers, a beautiful country house, one thing in common- they are all terminally ill and nearing the end of their lives.

The programme will follow the stories of Ben, Jayne, Junior, Lou and Andy. Aged between 38-58, they will be shown meeting regularly at the country house for weekends in which they met, got to know each other, enjoyed life and prepared for and discussed death. Lou has Motor Neurone Disease, Andy an incurable lung disease. The other three all have cancer.

In tonight’s edition the group discussed their personal lives before and after diagnosis. Viewers were introduced to their partners and families in some very moving moments which brought tears to my eyes.

Assisted suicide did come up in tonight’s edition. However it was only as a point of discussion. The group knew that it is illegal in the UK. Some of them wished it wasn’t- a view I do not, personally, share.

This programme set out to get the participants discussing and preparing for death. As a person disabled since birth, I have followed the issues it raised closely for several years. Personally, I hope the series will get viewers talking, too, about death and other issues around terminal illness and disability.

In particular, seeing the group together, how fast they bonded and how well they got along, reminded me yet again of something I’ve always believed in very strongly. That is that when you face illness or disability you need others in your life in the same situation. And no matter what the reason for the situation you find yourself in, the challenges you face are the same. On a lighter note, that idea is one of the reasons for the name of this site!

I will continue to watch the series with great interest.

After watching the programme, I was very sad to read that Ben, Jayne and Junior have all since passed away.

 

 

Newark: Disabled Person’s Car Blocked By ‘Vote UKIP’ Boards

June 5, 2014

Ukip campaigners in Newark allegedly hit back at a suspected Tory threat on Wednesday, by using boards reading ‘Vote Ukip’ to box in a car parked suspiciously close to their stall – only to find the driver was a disabled person attempting to get closer to the nearby shops.

Both parties had set up stands in the market town’s main square to target voters ahead of Thursday’s by-election in the Tory safe-seat.

Ukip hopes the ballot will see Roger Helmer become its first ever MP.

Photos of the incident posted online by political blogger Guido Fawkes, appear to show Ukip posters propped up against a silver vehicle stationed close to the party’s stall.

The blog claimed that Ukip representatives erected the signs in retaliation against what they saw to be a deliberate attempt by the Tories to disrupt their pitch.

It added that is “made for an awkward scene” when campaigners realised the car had a disabled driver sticker, and the person was most likely using the bay to access the local shops.

Ukip campaign manager Paul Oakden denied the allegations, and told The Independent that the driver may have given party members permission to put up the boards as he had received no complaints.

He went on to suggest that a nearby Conservative stand may have staged the entire event as a PR stunt.

“I haven’t seen boards next to a car, other cars parked there and heard of no similar issues. I can only imagine a board might have been rested against the car momentarily.

“We’re five stalls down from the Conservative stand; they might have taken the photos or put the boards up,” he said.

A spokesman for the Conservative Party, Tim Smith, said that campaigners on the scene made it clear the board had “nothing to do with them”.

“Obviously it’s not true that we would put posters up on the car, we don’t have a supply of Ukip posters.”

“When they thought it was just a car they put the posters up in an attempt to claim it for themselves, then rolled back slightly when they realise it belonged to someone with a disability sticker. It’s [a Conservative plot] a laughable suggestion”.

Archie Comic Prepares To Welcome First Disabled Character

June 4, 2014

In an effort to better reflect modern life, comic book mainstay Archie and his pals are set to get their first-ever friend with a disability, the series’ creators say.

The long-running

The long-running “Archie” comic book series will introduce a new character named Harper, who has a disability, later this month. (Archie Comics)

Archie Comics said that a new character named Harper will join Archie, Jughead, Betty, Veronica and Reggie in the fictional town of Riverdale beginning later this month.

A cousin to series regular and posh socialite Veronica Lodge, Harper is described as a “spunky fashionista” with a “dynamic personality.” Despite being depicted in a wheelchair, she does not let her disability define her, those behind the comic said in announcing the addition.

“Harper is the latest in a long line of characters we’ve introduced to make Riverdale feel like a city in today’s world,” said Jon Goldwater, co-CEO and publisher of Archie Comics. “Harper is, first and foremost, a funny, fashionable and witty teenager. The fact that she’s disabled is only one part of her story, and we’re excited to welcome her to Riverdale and Archie Comics.”

The idea to add a character with a disability to the venerable comic book series, which originated in the 1940s, was prompted by a conversation between writer and artist Dan Parent and Jewel Kats, an Archie fan who has a disability, officials said.

Harper’s first appearance will be in “Archie” No. 656, which will be available June 18.

Rutherfords Tell PM: ‘Visit Our Home And You’ll Drop #BedroomTax’

June 4, 2014

Paul Rutherford, grandfather to Warren Todd, a 14-year-old boy with a rare genetic disorder, knows that David Cameron must have an inkling of what his family goes through every day.

Warren is one of only 100 known cases of Potocki-Shaffer syndrome in the world. The condition affects every single part of his life.

Like David and Samantha Cameron’s son, Ivan , who died at the age of six in 2009, he needs round-the-clock care. Ivan lived with cerebral palsy and a rare and severe form of epilepsy known as Ohtahara syndrome.

Warren also has epilepsy, added to severe learning disabilities and skeletal problems.

His grandparents Paul and Sue can only imagine the pain the Camerons went through when they lost their “­beautiful boy”.

That’s why they make their offer ­carefully and without malice.

“We want to ask David Cameron to come to our home and visit our family,” Paul, 56, says. “We think if he could see how we live and what we do, and meet Warren, he would change his mind about the Bedroom Tax.”

Last week, Paul and Sue lost a case in the High Court against David Cameron’s tax . It means they will have to continue to pay.

On May 14, I went to court with the family to watch Rutherford v Secretary of State for Work and Pensions. It summed up what the Bedroom Tax is and does – a legislative juggernaut shattering lives in its wake.

On the left side of Court 27 at the Royal Courts of Justice, sat Paul and Sue, two disabled people who themselves care for a disabled boy, supported by the Child Poverty Action Group. The journey from West Wales had taken them hours and they had to leave Warren in respite care. On the right, an army of ­Department for Work and Pensions barristers, civil servants and press officers.

Paul Rutherford, attached to oxygen for a severe lung condition, frequently had to turn up the supply from the box in his bag.

The Prime Minister has claimed on several occasions that ­disabled people are exempt from the Bedroom Tax – but if this were the case the Rutherfords would never have been in court.

“It’s just not true,” says Paul, from Clynderwen, Pembrokeshire. “In our case and in very many others. If he comes to our home he will be able to see that for himself.”

In fact, there are only two very narrow exceptions for disabled people – for some children who cannot share with siblings and for some adults who need a room for overnight carers.

But despite a public letter from the heads of 18 charities from the RNIB to Mencap, the Prime Minister has never corrected his mistake.

Meanwhile, the Rutherfords, who look after their grandson because Warren’s mum has depression, are expected to pay £14 week from already stretched carer and disability benefits.

After a massive media campaign, they eventually won the right to Discretionary Housing Payments (DHP) to make up the ­shortfall. But they were initially turned down, and the payments have to be fought for again every year.

That’s why the Child Poverty Action Group brought a judicial review on the Rutherfords’ behalf.

After all, how can the family pay the so-called spare room subsidy when they don’t have a spare room – just a room for Warren’s ­equipment where his carers sleep?

And how can Warren be penalised for “under-occupying” a home specifically built for him by the local council to fit the severity of his needs?

And how would it possibly help the taxpayer for the Rutherfords to move out and adapt another smaller home, while a larger family occupied their adapted bungalow?

The Rutherfords’ barrister, Richard Drabble QC, argued that disabled adults weren’t charged the Bedroom Tax if they needed overnight care, so why should children pay it?

“We are arguing that this ­discriminates against disabled children contrary to Article 14 of the European Convention on Human Rights,” he told the court.

On Friday, we found out that Mr Justice Stuart-Smith did not agree. Even though he said it was “at the forefront of my mind that Warren is grievously ­disabled and that his grandparents have undertaken a heavy responsibility and burden”, he said he had to set that against “extreme national financial austerity”.

Yet Warren’s grandparents currently do a job it would cost the state £250,000 to provide. Meanwhile, DHP is costing the Government hundreds of millions.

The DWP said it was “pleased” with the court’s decision and called the Bedroom Tax “fair and necessary”.

“We have made £345million available to councils since the reforms were introduced to help families who may need extra support,” a spokesman said.

“The spare room subsidy… will give families in overcrowded accommodation hope of finding an appropriately sized property and will help bring the housing benefit bill under control.”

CPAG and the Rutherfords will now appeal. In the meantime, Paul hopes Cameron will accept his ­invitation to visit Warren.

This week would be a good week as it’s the first Rare ­Chromosomal Disorder Awareness Week, aimed at telling people about the challenges of living with a rare condition.

“Of all the politicians in government, I think David Cameron would ­understand what we are going through,” Paul says. “I really think it would change his mind.”

Autistic Children Being ‘Robbed Of Education’ Says Charity

June 4, 2014

While most children went back to school this week after the half-term holiday, Josh Moore wasn’t among them.

Four years ago, he was a happy ­nine-year-old thriving in a mainstream primary school.

As with most boisterous young boys, his behaviour occasionally gave teachers cause for concern, but Josh was settled and doing well in lessons.

But then he was diagnosed with ­Asperger syndrome – a form of autism – and his happy schooldays were suddenly over.

He was sent home from class nearly every day with little or no warning and mum Clare was constantly being phoned by the school and asked to fetch her son.

Now, aged 13, he has dropped out of the school system altogether.

Clare has since learnt that these ­‘temporary exclusions’ are actually illegal, but the catastrophic effect on Josh’s schooling will never be undone.

She is just one of tens of thousands of parents in the UK struggling to educate a child who is on the autistic spectrum of behavioural problems.

Four in 10 parents surveyed by the charity Ambitious about Autism for its ‘Ruled Out’ campaign reported that their autistic child had been illegally barred from attending school during the previous year.

One in 10 of them said it happened every day.

And many had been barred from going on school trips or taking part in social activities.

With more than 70,000 ­school-age children with autism in England, that means 28,000 children are potentially being robbed of the ­education they are entitled to.

One in five families surveyed by the charity said their autistic child had been formally excluded in the last year.

And that’s just autism.

In general, children with special ­educational needs are up to 11 times more likely to be permanently excluded, despite schools having a legal obligation to do all they can to meet their needs.

While schools have the right to formally exclude a child, it should only be treated as a last resort, in consultation with parents and the local authority.

Instead, Ambitious about Autism’s research suggests many schools are barring children simply as a way of managing their behaviour.

Clare, 34, from Birmingham, feels the system has failed Josh completely.

The impromptu exclusions hit after his Asperger’s diagnosis.

Within a few months, Clare was called in to take Josh home on an almost daily basis.

“I tried to negotiate a part-time timetable to help the school, but in reality they’d just phone me the day before and tell me if Josh was ‘allowed’ to go to school,” she says.

“Sometimes they would say things like, ‘We have a special assembly tomorrow and don’t think Josh will cope, so don’t bring him in’.”

Clare, a former midwife who is also mum to Jordan, 15, and Oscar, five, said: “He wasn’t hurting anyone.

“I’d typically get a phone call to collect him because he wouldn’t come out of the classroom at playtime or because he was tapping with his ruler in class.

“After his diagnosis, we thought the school would look after him and help us find our way with autism, but it was the o­pposite.

“He was in his last year of primary school and the staff just washed their hands of him.

“Within a year, his schooling had totally fallen apart.”

Clare and her husband Richard pinned their hopes on a new start at secondary school.

But after a promising first term, Josh experienced 13 fixed-term exclusions – documented, legal suspensions – and Clare pulled him out of school in June last year before he was expelled.

“My only option was to home educate,” she says.

“The education system failed him. As a mum you just want your child to enjoy childhood, but Josh became so unhappy.

“In my view, that was because he was not supported at school.

“What makes it even sadder is that we are far from alone.

“Autism is so well ­recognised nowadays, it is hard to believe there is such ignorance among those who should be helping the most.”

Jolanta Lasota, chief executive of ­Ambitious about Autism, said tackling the problem should be a national priority.

“The education system is failing a very large number of children on the autism spectrum,’’ she says.

“For the last 70 years it has been the right of every child to attend school, and that right is no different for children with autism.

“There are over 70,000 children in England of school age with autism and 70% of them are attending mainstream schools.

“Some schools are doing a brilliant job and, with the right support, children do very well.

“Yet four in 10 have been subjected to illegal exclusion in the last 12 months and 20% have been formally excluded.

“The long-term implications are huge because we know that most of those children will end up unemployed and dependent on others for the rest of their lives.”

Her charity is demanding action to ensure every school has access to a specialist autism teacher – 60% of teachers in England have reported not having adequate training to teach children with autism – and every parent to know their rights.

For Helen Leask, 37, from Farnborough, Hampshire, the actions by her son Daniel’s infant school came close to having ­catastrophic consequences.

“From the start I told them that ­something wasn’t right with Daniel, but they said ‘no, there’s nothing wrong’.

“They wouldn’t acknowledge that there was a real issue, when I knew as a mother that there was.”

Even in his last year of infant school, when Helen and her husband were called to collect Daniel on at least four occasions because of his ­behaviour, the school would not admit there was a problem.

The unofficial exclusions were not ­documented, which meant there was no record of his problematic behaviour.

Moving to junior school proved a crunch point for Daniel.

“Within two weeks, I was having to collect him from school early, coaxing him out from under tables or trying to get him to climb down from a tree,” Helen says.

“They tried their hardest, but because of the lack of information from the infant school, help could not be put in place in time to keep Daniel in school and he was permanently excluded.”

For Helen, who also has a daughter, Ella, 12, the temporary exclusions proved not only frustrating, but also a huge practical obstacle to getting help.

 

Having not been officially excluded, Daniel wasn’t on the local education authority’s radar.

“The school was begging for help but because the LEA had not heard of him, we had to wait for it to catch up.

“We were on our knees, begging for them to give him a statement of special needs.

“I was in the horrible position of wanting someone to tell me there was ­something wrong with my child.”

Eventually, when he was seven, it was confirmed that Daniel was on the autism spectrum.

“The experience set Daniel’s ­education back by at least two years and it ruined his self-esteem,” says Helen.

“It was heartbreaking to see him regress, knowing in his own way he was crying out for help.”

Helen says that parents need to know that these exclusions are wrong and illegal, and schools need to be more aware of the implications of their actions.

Eventually, the LEA agreed that Daniel, who is now 10, needed to be in a special needs school, where he is thriving.

“They’ve given me back my child,” says Helen.

Another mother, Kasthuri, who does not wish to give her surname or son’s name, was called by his primary school to collect him 18 days in a row.

“They treated him like a piece of fu­rniture, not a human,” she says.

Her son’s first 18 months of schooling, after he was diagnosed with autism aged three, was in India, where Kasthuri says he received care tailored to his needs, so much so that he was exceeding expectations.

His teaching assistant from India then spent six months in the UK settling him into Year One at primary school.

 

But just three days after she left, in October last year, Kasthuri was called for the first time to collect her son – the first illegal exclusion of many. Kasthuri is angry that the LEA did not step in and tell the school they were acting illegally .

Her son was eventually issued with a fixed-term exclusion from school.

He has now been given a place at a school for children with severe needs, despite Kasthuri’s ongoing belief that a setting for children with mild learning ­disabilities would be better for him.

“The LEA won’t listen,” she says.

“Instead of looking at the individual child, their attitude is ‘You should be happy with what you’ve got’.”

In the proper environment there would be no limits for her son, she says. “Instead, he has been written off at the age of seven.”

The Department for Education said: “All councils must ensure children are educated in a setting which meets their needs, and schools must follow strict rules when excluding pupils.

“‘Informal’ or ‘unofficial’ exclusions, such as sending pupils home ‘to cool off’ are unlawful, regardless of whether they occur with the agreement of parents or carers.

“Any exclusion of a pupil, even for short periods of time, must be formally recorded.

“If parents of children with ­disabilities believe their school has unlawfully excluded their child, they should first make a complaint to the school.

“If they are not satisfied with the response, they can make a disability discrimination claim to the First-tier Tribunal (Special ­Educational Needs and Disability).”

It added that the Government is tackling the causes of exclusion by funding training on autism and with its ­Children and Families Bill which will give parents a greater role in decisions.

Find out more about the Ruled Out campaign at ambitiousaboutautism.org.uk

Cheap Phone Number For DWP

June 4, 2014

Many thanks to reader Leon Carter for sharing this online.

 

Updated: Reader Marysia Kurowski points out that the number will in fact cost you the same as an 01 or 02 number. However this is still cheaper than an 08 number so worth noting.

‘I Use Wife’s Blue Badge To Buy Her Minty Biscuits’

June 4, 2014

Blue Badge misuse ‘drives’ me mad, but even I can’t help but laugh at this:

Letter to Jeremy Hunt 2 – Help & Justice for Sharmila Chowdhury

June 3, 2014

Please share widely.

sharmilachowdhury's avatarSHARMILA CHOWDHURY

The following letter has been sent to Jeremy Hunt today:

30 May 2014

Rt Hon Mr Jeremy HuntHealth Secretary

Dear Mr Hunt

Re: My case as an NHS Whistleblower

 I have just received the email (attached) from your Special Advisor, Ed Jones.

 To say the letter from Dr Dan Poulter is outrageous is an understatement.  I would have thought that you would have felt somewhat relieved that I was not in receipt of this letter written in February. Instead you decide it appropriate to send it to me via email today. Clearly in support.

 It is scandalous that as the Secretary of State you do not take responsibility for the protection of NHS whistlebowers who are persecuted in hospitals and other settings, for which you are in charge. Instead you choose to hide by labelling ‘whistleblowing’ cases as ‘employment’ issues and do nothing to help.

 In previous…

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Skate Park For Wheelchairs Planned

June 3, 2014

A skatepark designed specifically for wheelchair users is being planned by a children’s charity.

Festival For Young People will submit plans this month for an extension to an existing skatepark in Petersfield.

The charity aims to raise £138,000 via grants and fundraisers for the extension which will have more gentle gradients for wheelchairs.

Students from Treloar College in Alton visited skate tracks to see what they could cope with in a wheelchair.

‘Daredevil activities’

Designer Jeremy Donaldson from contractor Wheelscape created designs using slopes at the same angle as a wheelchair ramp – three degrees – after meeting with students at the college.

Petersfield Town Council has approved the plans and a further planning application to East Hampshire District Council will be submitted this month.

Chief executive of the charity Action For Kids Graham Duncan said: “There is no reason to prevent any young person with a disability from even the most daredevil of activities enjoyed by others.

“We hope that local authorities, charities and providers of sports amenities will follow this example.”

Is the Fight for Truth Important?

June 3, 2014

jaynel62's avatarjaynelinney

As reader are fully aware, Debbie Sayers and I presented our first petition to Parliament last year which helped get Iain Duncan Smith & Lord Freud called into the Work & Pensions Select to answer for their misuse of statistics.

At that time RosWynne Jones of the Mirror asked me if it had been worth the effort, I replied  We’ll keep up the fight and keep campaigning. It doesn’t end here” and it hasn’t. Since then Debbie and I have worked tirelessly on collating the data that demonstrates our claim and of course we published our 2nd petition demanding the House of Commons accept the Selects three recommendations on delivery and use of statistics.

Since the publication on 15 May, there have been numerous accounts of Politicians continuing to spin statistics and deny the reality of Welfare Reform issues, I’ve personally written about Evidence behind growth in food banks,  Rising ESA…

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Roger Helmer MEP Writes To Mail On Sunday

June 3, 2014

This was left earlier today as a comment in response to this post. It was originally posted at Roger Helmer’s blog. I am posting it here to avoid any confusion.

Deliberate, defamatory lies from the Mail on Sunday
by rogeroffice

On June 1st, the Mail on Sunday published what purported to be a report on my interview with their Political Editor Simon Walters.

In fact, the piece bore little or no relation to our interview, and appears to be simply a pre-cooked hatchet job, packed with deliberate and defamatory lies. I have written to Mr. Walters in the following terms.

Simon Walters – Political Editor, Mail on Sunday

Dear Simon,

A few days ago I took time out of my busy by-election schedule for an interview with you. You raised the issue of homosexuality. I was reluctant to spend time on it, as it is not high on my agenda and it certainly doesn’t seem to exercise voters in Newark — it has never once been raised with me in the street or on the doorstep. And I am becoming increasingly frustrated by the media’s relentless obsession with a few tangential remarks on social issues from years ago, and reluctance to address the real issues of either the euro-elections or the Newark campaign. Nevertheless I answered your questions clearly and honestly.

So I was shocked to read your subsequent story, in which you assert that I “called for gay cures on the NHS”. This is a deliberate and defamatory lie. I said no such thing. You have deliberately and knowingly published a false and defamatory statement a few days ahead of a critical by-election, with the prima facie objective of influencing the outcome of that election. I understand that this represents an offence under electoral law

The question arose because of a minor furore in the media three years ago over therapists and/or religious groups who claimed to be able to reverse an individual’s sexual orientation. There was a great deal of strident and aggressive criticism from the gay lobby at the time, both against those offering such “treatment”, and against individuals who sought it. I felt that this criticism was deeply illiberal, and that if an individual believes that a course of treatment would help him, or might help him, then in a free country he should be entitled to pursue it.

I also made a comparison with homeopathy, another therapy about whose efficacy there is widespread scepticism. I don’t know whether a person’s sexual orientation can be changed, and I don’t know if homeopathy works. In both cases I doubt it. But as a libertarian I defend the right of those who think either might work to engage with them.

Let’s be clear: I have never said that homosexuality is “an illness”, or that it can be “cured”. I have never asserted that homosexuals can be “turned”. I have never advocated “gay cures”.

In particular I would vehemently oppose any move to offer “gay cures” on the NHS. No treatment should be offered on the NHS unless it is of proven clinical efficacy and demonstrable cost-effectiveness. I am not aware of any proposal to offer “gay cures” on the NHS — this appears to be a figment of your imagination. But if there were any such proposal, I should oppose it robustly. Your suggestion that I “called for gay cures on the NHS” is a downright and preposterous lie, and a deliberate attempt to damage my reputation.

In fact you have not written up our interview at all. You have simply written up your own preconceived stereotype of what a UKIP candidate might be like, and you have totally ignored what I actually said to you. This is nothing less than a deliberate hatchet job.

Nowhere is your trashy journalism more evident than in your description of me as “a retired colonel”. Had you asked, or had you done a scrap of relevant research, you would have found that I am not a retired colonel, and that I have never served in the Armed Forces at any time.

Will you please now issue an immediate retraction and apology, ahead of Thursday’s by-election. If you fail to do so, I shall certainly refer the matter to the Press Complaints Commission, and I will also consider what legal remedies may be available.

ROGER HELMER MEP

Deaf Matthew Powe Cleared Of Vitalis Katakinas Murder

June 3, 2014

A Crouch End man accused of killing a deaf Shakespeare actor with a single punch broke down in tears as he walked free from court.

Matthew Powe was acquitted of murder and the lesser alternative of manslaughter at the Old Bailey jury on Monday.

The 30-year-old had told the court he was acting in self defence when hit Vitalis Katakinas – acclaimed for his performance in a deaf production of Shakespeare’s Love Labour’s Lost – at the White Swan Pub, in Highbury, on June 29 last year.

Mr Katakinas suffered severe head injuries and died a week later.

Medical experts claimed the punch was delivered with enough force to twist the victim’s head and tear the vertebral artery.

Jurors heard how Powe got in the middle of an argument between the Mr Katakinas, who he did not know, and another deaf man, who was one of Powe’s teammates in Barnet Deaf FC.

Team captain Powe told them to “lay off” and branded them both “thick”. Mr Katakinas responded by knocking his glasses off.

Powe, of Inderwick Road, then put his glasses back on before lashing out.

Witnesses described Powe tackling Mr Katakinas and dumping him to the ground, causing his head to hit a step. The prosecution claimed Powe had acted out of revenge after consuming a cocktail of cocaine, alcohol and cannabis.

But Powe told the jury he was trying to act as a peacemaker because there were children around.

“I could see they were signing in an intimidating way and the signing was offensive and violent.

“I wanted to get Thomas away. I was captain of the Barnet football club so I felt it was my duty to get him away.

“My only intention was to calm things down.”

Powe added: “I didn’t mean this to happen.”

Ryland Whittington- Deaf, 6- And Transgender

June 3, 2014

The London Paralympic legacy, two years later: Vox Political’s predictions were true

June 3, 2014

Mike Sivier's avatarMike Sivier's blog

Plight of the Paralympians: This is what they were being told to expect in September 2012. Plight of the Paralympians: This is what they were being told to expect in September 2012.

Two years ago, Vox Political warned that the legacy of the London Paralympics would be the loss of disability benefits for the British athletes who took part.

“They have proven they’re fit enough to work and therefore don’t need [the money],” is how this blog’s article of the time described the situation. “Right?”

Right.

Gratitude goes to Tom Pride for drawing attention to the plight of basketball player Jon Pollock, who has been refused any benefits at all since he became unemployed after the Games.

His situation is exactly as Vox Political predicted in September 2012. Following up on previous warnings that the Coalition government had launched a campaign of hate against ordinary people who had been claiming incapacity or disability benefits, the article stated: “We knew that, once the chance for profile-boosting…

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British Paralympian: “I’ve been tossed on the scrap heap”

June 2, 2014

Tom Pride's avatarPride's Purge

(not satire – it’s the UK today!)

Paralympian wheelchair basketball player Jon Pollock says he has been “tossed on the scrap heap” after being refused any benefits when he became unemployed.

He also said the Job Centre was “absolutely useless” when it came to helping him find a job and that the only advise he got was from a woman in the job centre who advised him to do unpaid charity work.

Read the full story here:

Retired British Paralympian hits out at London 2012 legacy after failed job hunt

So much for the so-called Olympic and Paralympic legacy heralded so enthusiastically by the government 2 years ago.

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Please feel free to comment.

.

View original post

Leading Wheelchair Lift Provider Thrilled as BBC Appoint Disability Correspondent

June 2, 2014

A press release:

 

 

Sesame Access, one of the UK’s leading providers of bespoke wheelchair lifts and disabled access solutions, have spoken out about the BBC’s recent decision to appoint a specialist Disability Correspondent. With Sony-award winning journalist Nikki Fox coming on board at the BBC to highlight the issue of disability to national audiences, Sesame Access are wholeheartedly endorsing the move, which they say will bring matters of disabilities and equal access to a much wider demographic.

Steven Lyons, Managing Director of Sesame Access, which has provided custom-made wheelchair lifts for Kensington Palace, Sotheby’s Auction House, Paris and Tate Britain, said, “It’s fantastic news that the BBC are increasing the coverage for the disabled community on their many platforms. We are strong advocates of disability coverage in national news, and we are thrilled to hear that this national stalwart of broadcasting has chosen to bring the issue of disability to their widest audiences. Fair and equal treatment for the disabled is something we are passionate about.”

He adds, “At Sesame Access, we’re always trying to bring the issue of disabled access to the wider public’s attention. We congratulate Nikki Fox on her new position and look forward to her reports and hard work in bringing more disability news to our screens.”

Sesame Access are always striving to bring disabled access to buildings around the country, whether they’re private residences or public buildings. Their range of high-end wheelchair lifts and retracting stairs have been used at some of the country’s most high-profile locations, including TATE Britain, the Barbican Centre and both Oxford and Cambridge Universities. Many of these lifts have come about as a result of improved disabilities coverage and attention nationwide. The thinking at Sesame is that, with more disability news being reported, many more public, private and even listed buildings will be aware that disabled members of society could make up a huge proportion of their clients, customers or visitors. Consumers with a disability spend in excess of £80bn in the UK economy, and could represent up to 20% of any UK company’s customer base, making it more crucial than ever for businesses to consider improving their accessibility options.

Sesame’s range of lifts are architecturally sound – they integrate seamlessly with the existing surroundings, whether they’re historic marble stairways or contemporary new entrance areas. Protecting the architectural significance of a building is of paramount importance to Sesame, and their invisible lifts have helped many thousands of disabled people to have full access to some of the most prestigious and important buildings in the country.

For more information about Sesame Access Systems, and to take a look at their product range, visit their website: http://www.sesameaccess.com/

About Sesame Access Systems: Sesame Access designs, builds and installs bespoke ‘invisible’ wheelchair lifts into stunning listed and non-listed buildings, both in the UK and in Europe. We provide our unique retracting stair lifts and invisible platform lifts to ensure that access is available to all, without affecting the wonderful interiors of these protected architectural marvels.

 

The reality of the Coalition’s crackdown on tax credits

June 2, 2014

Mike Sivier's avatarMike Sivier's blog

Nothing more to say: This Tax Credits advert was intended to warn people to keep up-to-date with information they send HMRC about their Tax Credits claim; now it seems the message is much simpler - they want to stop paying you anyway. Nothing more to say: This Tax Credits advert was intended to warn people to keep up-to-date with information they send HMRC about their claim; now it seems the message is much simpler – they want to stop paying you anyway.

A guest blog by ‘Mimismum’.

What follows was posted to Vox Political as a response to Tax Credits and Debt Collection Agencies: Peachy’s Comment. It details the facts of the situation for just one struggling family and as such was worth a larger audience than it would have received as a comment on another article.

This government scares the s**t out me. I don’t know how much more stress I can take now. It has gone beyond anything like “austerity” or “in it together” rhetoric and is now a witch hunt against the poor or low earners, sick and disabled – even going as far as blaming us for…

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UKIP PPC Roger Helmer Says NHS Should Fund ‘Gay Cure’ Therapy

June 2, 2014

UKIP MEP Roger Helmer – who is running for Parliament this week in the Newark by-election – has claimed the NHS should fund ‘gay cure’ therapy.

In an interview with the Daily Mail today, Helmer claimed that offering gay cure therapy on the NHS was no different from treating trans people.

He said: “One person is unhappy with their physical sex and wants to change it and we say, ‘OK you can do it’.

“You have a homosexual who says, ‘I’m homosexual, actually I’d rather be straight, is there a way of fixing it?’

“We say to the person who wants to change from a man to a woman or vice versa, ‘Please do that on the NHS’.

“We say to this guy, ‘That’s wicked, you’re not allowed to think about it’.”

“I don’t know if homeopathy works or not, but I will defend the right of anyone who believes it works to try it.”

He continued to claim that ‘strident’ gay rights groups like Stonewall had twisted his previous anti-gay comments, claiming they could not be described as homophobic.

He said: “Phobia is well defined in psychiatry – get a definition of it.

“We [Ukip] don’t deny there’s prejudice against minorities, and we condemn it.

“However, it isn’t a phobia. When people say ‘we support traditional marriage’, Stonewall says, ‘Homophobia, homophobia’. It’s a perfectly respectable position to take, it doesn’t require abuse and isn’t a phobia’.”

He also repeated his previous claims that same-sex relationships don’t deserve the same respect, saying: “Marriage is defined by history, culture and reproductive biology and deserves special respect in society. (I am) perfectly relaxed about other relationships but they don’t justify the same respect.”

Helmer, 70, is no stranger to controversy, and has been involved in a long-running homophobia row in recent months.

UKIP MEP Roger Helmer is standing in next week’s Newark by-election, despite a row over homophobia.

Helmer, 70, has previously said the public should be able to openly dislike gay people.

He also claimed homosexuality is not a lifestyle worthy of respect, and claimed that the media are “obsessed” with sexuality.

UKIP leader Nigel Farage had attempted to defend Helmer from accusations of homophobia, claiming that “most” over-70s feel uncomfortable about gays.

He said: “Roger Helmer is fighting this by-election for us; he’s somebody of 70 years of age who grew up with a strong Christian Bible background; he grew up in an age when homosexuality was actually imprisonable, and he had a certain set of views which he maintained for many years which he now says he accepts the world’s moved on and he’s relaxed about.

“As I say, when Roger grew up and, indeed, when he was an adult, homosexuality was illegal in this country, and he held that view for some period of time.

“And actually, if we asked the 70s and over in this country how they felt about it, most of them still feel uncomfortable.”

Jobcentre demands ‘pure science fiction’, claims Ross-shire councillor

June 2, 2014

thelovelywibblywobblyoldlady's avatarThe lovely wibbly wobbly old lady

Reposted from Rosshire Journal

AN “INHUMANE” welfare system is forcing claimants to make absurd promises to Job Centre advisors just to qualify for their unemployment benefits, councillors said yesterday.

One claimant agreed to apply for 14 jobs a week to avoid having his payments sanctioned while others have signed pacts forcing them to turn up at the Jobcentre every day to scan the jobs database.

Cllr Ian Cockburn: 'Pure science fiction'
Cllr Ian Cockburn: ‘Pure science fiction’

Alasdair Christie, Inverness, Badenoch and Strathspey Citizens Advice Bureau manager, said people were being forced to sign up to unrealistic targets out of fear.

“Somebody promised they would apply for 14 jobs per week but if you look in the Courier or the P&J there probably aren’t even 14 jobs a week. These people will, out of desperation, sign up to any condition in order to get their benefits.”

The comments were made after a new report to Highland…

View original post 342 more words

My Last Summer

June 2, 2014

Andy Priest has a life that might sound enviable. He and his wife Annette have been together for 15 years, but are closer than ever. They live in a Suffolk village with their six-year-old daughter, Isobel, and Andy says he spends far more time with her than many fathers manage to spend with their children. Over the past couple of years he has radically readjusted his personal compass. “I used to work all the time,” he says. “I was very materialistic – it was all about having stuff and buying labels. Today, I’m a much more pleasant person: I’m empathetic, and I make time for people. I know what matters most in life – relationships and family.”

But there is a caveat in his idyll, and it’s a big one. Andy, 48, is dying. Aggressive treatment for leukaemia has left him with terminal lung damage. “I can feel the disease getting worse each day,” he says. “I know time is running out for me.”

Eighty miles away in Kent, Andy’s friend Lou Street, 39, is also dying. Life for her revolves around home and her family: she and her husband John have two daughters, Mimi, six, and Ria, nine, and she also has two older children by previous relationships and a three-year-old granddaughter, Imogen. Lou has motor neurone disease. So far, she has outwitted her doctors: in December 2010, they gave her two and a half years to live. But she knows she can’t cheat death for long: there’s no cure and the type she has is always fatal. So, like Andy, she concentrates on making every day count.

Andy and Lou became friends after they agreed to participate in a documentary series for Channel 4. It’s a kind of Big Brother set in a picturesque country house in Gloucestershire, but the five housemates are terminally ill.

 
 
 

If that makes it sound mawkish or grim, it really isn’t: there is sadness and there are regrets, but most of all there is plenty of laughter, lots of fun, tenderness, honesty and plain speaking. The dying have much to teach the living: so in many ways, this project is the zenith of the Big Brother experiment. At long last there’s a real point to watching the minutiae of interaction between a group of strangers thrown together by a television production company because this time their concerns and conversations are littered with nuggets of insight and humour from which we can all learn.

Both Andy and Lou say their priorities changed dramatically after they were given a terminal diagnosis: but for one of the housemates in the series, the shift was seismic. With just months to live, 58-year-old Jayne Pritchard Jones decided to leave her husband: he hadn’t been supportive when her condition was diagnosed, she said, and she could see no point in them staying together for whatever was left of her life. She also decided to embark on a last-ditch search to be reunited with the son she gave up for adoption when she was 17: in the film, she is seen agonising over whether it would be better for him to meet his mother while there was still time, or whether introducing herself when she was dying was worse for him than never knowing her at all.

Ann Munro, a palliative care psychotherapist who was a consultant to the documentary and appears in it, says a terminal diagnosis is often accompanied – where an individual is living a life they know is unfulfilled – with a kind of mid-life crisis moment; though even within that context, she agrees that Jayne’s decision to leave her husband was extraordinary – and extraordinarily brave. “Many of us stay in a relationship or a job because it feels like the easy thing to do. But when you are confronted with a much shorter lifespan, it sometimes suddenly seems essential to change whatever needs changing for at least the time you have left.”

She has seen it many times, she says. “Being told your future is limited focuses the mind in a way that nothing else can; and the tragedy is that it takes something this appalling to happen before a person ends up living the life they really wanted to live.”

Since the documentary was filmed, Jayne has died; so have the other two housemates, Ben Leggett and Junior McDonald. Unsurprisingly, Lou and Andy, the two surviving participants, took the deaths especially hard, but both say they are grateful to have had the chance to get to know others in the same situation.

What is odd about dying is that, although it is the one universal experience we are all guaranteed, being in the countdown phase can feel uniquely lonely. “It’s one thing to know you’re going to die at some point and quite another to have the clock ticking,” says Ann Munro.

Lou says that finding out she was dying made her feel quite separate from everyone around her. “Your family and friends don’t experience the world as you experience it any more. What was brilliant about the documentary was that it put us in a situation where we were surrounded by other people who did understand, and were going through exactly the same things. They weren’t just nodding and saying ‘I know’ when they patently hadn’t a clue; they were in the same boat.”

Sometimes one of the others would do something that might seem odd, like texting in the middle of the night. “They knew I’d understand. We’re on a quite different path from other people. We are living outside the normal boundaries.”

It is also a very different experience to find you are dying in your 30s or 40s than when you are in your 80s or 90s. “When someone else in the house said they knew what I meant about sleepless nights, or about my lack of sex drive, they really did understand,” says Andy. “There are things you can’t talk to many people about.”

That is partly because the dying person may feel a need to protect others. That realisation has been a surprise, says Lou. “You imagine that if you were dying you’d be looked after, but you end up looking after everyone else. I don’t want to put my children and my husband through this – it’s the last thing I want to do. So I work hard at keeping things as normal as possible for them.”

 

It wasn’t always this way. When she was given her prognosis, Lou went home and went to bed. “I stayed under my duvet for weeks. I took the medications they gave me and I could feel myself slipping away. I was a bit of a zombie – the drugs really affected me. Then, one day, I thought I’d do it my way: get out of bed again, take the minimal amount of medicine and live for the day. Since then I’ve done really well. I don’t get up thinking, I’m dying; I get up thinking, what do I need to do today?” Suddenly, she feels she’s too busy to die. “I’ve got lovely children, a big garden to look after, the washing to get through and the girls’ bedroom to finish decorating.”

For Andy, getting this positive message across is one of the reasons he agreed to be part of the TV project. “Some people who get told they’re terminal simply give up, but you really don’t have to do that. You can change your life, focus on what matters, adapt to the new circumstances. Things are never going to be the same, but it’s not over till it’s over. I don’t think of myself as dying: I know the disease I’ve got is going to kill me, but I don’t know how long it’s going to take to do that.”

His biggest fear is leaving Annette, and especially Isobel, behind. He worries about his three older children too, but they are in their late teens and early 20s, and have their own lives. Isobel shares his life on a daily basis. “We can’t go out together as often as I’d like, but we have lots of hugs. What terrifies me though is thinking of the day when she says, ‘I want my daddy’ and I’m not here.” He worries, too, about how growing up with a seriously ill father for the past four years will affect her future. “It’s made her childhood very different. At the age of two her favourite toy was a chemotherapy box complete with pretend-drugs and syringes and a little pair of gloves. You can’t help thinking, what will all this mean for her when she’s older?”

Annette was also included in some of the weekends filmed for the documentary; for her, as for Andy and Lou, the chance to get to know others in a similar situation has been invaluable. “It’s lonely for partners, just as it’s lonely for the people with the illness,” she says. “Friends do fall off … people are frightened. They don’t know what to say to you. People are there [at the start] and they’re there at the end, but in the middle you’re on your own.”

What Andy, Annette and Lou hope is that the documentary will help to demystify the process of being terminally ill, while also making the obvious point that it’s important to appreciate what you’ve got because you won’t have it for ever. “When I hear people moaning about something in their life not being right, I think, I’ll swap your worries for mine,” says Andy. “In many ways my life is like being in a bubble.”

It’s a bubble where what matters is razor-sharp, and where it’s incredibly easy to let go of the unimportant stuff; a bubble we might all want to inhabit in different circumstances and a situation we can all certainly learn from.

 

• My Last Summer starts on Channel 4 on 4 June at 10pm

A Point Of View: Disability And Happiness

June 2, 2014

Surveys reveal that people with disabilities consistently report a good quality of life, says Tom Shakespeare. So why is it often assumed they are unhappy?

Have you ever thought to yourself: “I’d rather be dead than disabled?” It’s not an unusual reflection. Disability, in everyday thought, is associated with failure, with dependency and with not being able to do things. We feel sorry for disabled people, because we imagine it must be miserable to be disabled.

But in fact we’re wrong. It’s sometimes called the “disability paradox”. Surveys reveal people with disabilities consistently report a quality of life as good as, or sometimes even better than, that of non-disabled people.

Impairment usually makes little difference to quality of life. Research shows, for example, that overall levels of life satisfaction for people with spinal cord injury are not affected by their physical ability.

Even the clinical facts of whether their spinal lesion is high or low, complete or incomplete – all aspects that affect functioning – don’t seem to make much difference. Human flourishing is possible even if you lack a major sense, like sight, or you can’t walk, or you’re totally physically dependent on others.

So what’s going on?

If you think about it for a moment, you realise that people born with an impairment have nothing to which they can compare their current existence. Someone lacking hearing or sight has never experienced music or birdsong, visual art or a sublime landscape. Someone with an intellectual disability may not consider themselves different at all. Someone like me, born with restricted growth, has always been that way. Even if life is sometimes hard, we are used to being the way we are.

For people who become disabled, there’s a typical trajectory. I can say this from personal experience, having become paralysed in 2008. Immediately after the onset of injury or disease, one can feel profoundly depressed, and even contemplate suicide. Yet after a period of time, people adapt to their new situation, re-evaluate their attitude to the disability, and start making the most of it. Sometimes, they are driven to greater achievements than before. Remember those amazing Paralympic athletes…

Maybe you are sceptical about the subjective nature of quality-of-life data. Bioethicists sometimes describe these self-reports in terms of the “happy slave” concept, in other words, people think they are happy because they do not know any better. Perhaps these cheerful people with disabilities are deluding themselves. Or, perhaps they are fooling others. Maybe in private they admit to misery, while in public they put on a brave face. Either way, it’s said these folk must be in some kind of denial.

There is some positive correlation between seeing meaning in life and being happy, says Pascale Harter, but studies suggest this is not a necessary condition for happiness. Studies from all over the globe collated by the World Happiness Database in Rotterdam have produced some surprising findings about what makes people happy.

But these explanations are patronising, not to say insulting. More importantly, they’re wrong. Research in a field called hedonic psychology has supported disabled people’s self-reports of good quality of life. Scientists such as Daniel Gilbert have done very thorough testing of what people say and how they think. They’ve come up with the concept of hedonic adaptation – which refers to the way in which after trauma, quality of life eventually returns to approximately what it was before the trauma struck. Amazing, eh? Unfortunately this also happens in reverse – so, if you are lucky enough to win the lottery, you’ll feel like £10m for a year or two, but then you’ll go back to being as miserable or cheerful as you were before your stroke of luck.

So if these self-reports are true, we will need to find better ways of understanding the disability paradox.

To start with, we can offer more nuanced accounts of the psychological processes that go on in the mind of a person with disability. Adaptation means finding another way to do something. For example, the paralysed person might wheel, rather than walk, to, places. Coping is when people gradually re-define their expectations about functioning. They decide that a stroll of half a mile is fine, whereas previously they would only have been content with a 10-mile ramble. Accommodation is when someone learns to value other things – they decide that rather than going for walks in the country with friends, it’s far more important to be able to go to great restaurants with them. This teaches us an important lesson – human beings are capable of adapting to almost any situation, finding satisfaction in the smaller things they can achieve, and deriving happiness from their relationships with family and friends, even in the absence of other triumphs.

Our appraisal of life with impairment may have less to do with reality than with fear and ignorance and prejudice. We wrongly assume that difficulties for people result in misery for people.

Even to the extent that impairments do entail suffering and limitation, other factors in life can more than compensate for them. Take the recent French box office sensation Les Intouchables, in which the protagonist, Philippe has tetraplegia, but despite this, he is able to have a good quality of life because he has money. Even people who aren’t lucky enough to be wealthy Parisian aristocrats can enjoy the benefits of friendship or culture, despite the restrictions that impairment places on them. By contrast, it is plain to see that someone can have a fully functioning body or mind and yet lack the social networks or the personality necessary for living a happy and fulfilled existence.

This highlights the importance of the environment in determining the happiness of disabled people. As in most areas of life, it’s structural factors that make the real difference. Participation, not impairment is key. Do access barriers stop you going to school with your friends? Do you have a job? Does society meet the extra costs of having an impairment through a welfare system which is fair and non-stigmatising? Do you face hostility and hate crime? Unfortunately, in most of these respects the situation for disabled people has been getting worse, not better, in recent years. According to the Centre for Welfare Reform, this government’s spending cuts have had a hugely disproportionate impact on the lives of disabled people in poverty.

In arguing that social barriers are more of a problem than the impairment itself, I am not suggesting that fear is completely irrational. For a start, disability is very diverse in ways that mean we have to soften the claim that “disability is no tragedy”. Some illnesses and impairments undoubtedly involve greater degrees of misery or suffering than the average human should have to endure. I’m thinking of depression, for example, which biologist Lewis Wolpert memorably labelled “malignant sadness”. There are some nasty and painful degenerative diseases. Impairments that involve considerable pain, whether physical or mental, are obviously less compatible with a good quality of life.

It’s also true that in general, disabled people usually have fewer choices than non-disabled people. Most societies still have limited accessibility. Even in a barrier-free world, the disabled person is more likely to rely on mechanical devices that periodically malfunction, rendering the individual excluded or dependent. I have been stranded thanks to a flat tyre on my wheelchair or a broken lift numerous times. Most disabled people become inured to the frustrations of inaccessibility or breakdown, but it certainly makes life less predictable and less free than it is for the non-disabled.

But my point is that while disability is not simply an irrelevant difference, like the colour of your skin, neither need it be a tragedy.

And remember: Mere existence entails problems. Hamlet, listing reasons why death is to be preferred, highlights “the thousand natural shocks that flesh is heir to”. To be born is to be vulnerable, to fall prey to disease and suffering, and ultimately to die. Sometimes, the part of life that is difficult brings other benefits, such as a sense of perspective or true value that people who lead easier lives can miss out on. If we always remembered this, perhaps we would turn out to be more accepting of disability and less prejudiced against disabled people.

A Point of View is broadcast on Friday on Radio 4 at 20:50 BST and repeated on Sunday at 08:50 BST. Catch up on BBC iPlayer

Mike Penning Says UEFA Should Consider PSG ‘Ban’ Over Disability Abuse

June 2, 2014

Uefa should look at throwing Paris St-German out of the Champions League if their fans are found guilty of abusing disabled Chelsea supporters, says Disabilities Minister Mike Penning.

Five Chelsea fans and their carers say they were spat on and had bottles, chewing gum and coins thrown at them at the Parc des Princes on 2 April.

“There’s no point in fining a club. It’s loose change,” he told BBC Sport.

“I think if they’re in the Champions League next year should be looked at.”

Chelsea lost their first-leg quarter-final in Paris but won the return leg to progress to the semi-final of Europe’s elite club competition.

Paris St-Germain could face a partial stadium closure if found guilty of discriminating against disabled Chelsea fans, with Uefa expected to announce its decision on 17 July.

Lisa Hayden, a wheelchair user and Chelsea season ticket holder, said she was terrified by the ordeal.

“It was very threatening. I felt we didn’t stand a chance in there and that someone was going to get seriously injured,” she said.

“It seemed like I was sitting in hell and it was something that I had no control over.”

Hayden suffered a serious brain injury in 1988 that has left her susceptible to another haemorrhage and said a blow to the head from a bottle or coin could have killed her.

“I felt no-one had our backs: there were 10 of us and thousands of them and I didn’t think we were going to get out of there,” she added.

“I had a panic attack at the end of the match and I couldn’t calm down.”

The issue of seating disabled fans with opposing supporters is not confined to the Parc des Princes. Disability charity Level Playing Field says that last season five clubs in the Premier League sat away fans in the home section: Aston Villa, Liverpool, Manchester United, Tottenham Hotspur and West Ham.

“I don’t think that’s acceptable,” said Penning.

“Disabled fans are fans and they shouldn’t be treated any differently. They should be sat with their own fans and be able to enjoy the game like everyone else.”

Lisa’s husband Peter, who was also at the Parc de Princes, said the treatment of disabled fans had to improve.

“I think it’s unbelievable in this day and age,” he said.

“I don’t know why they can’t make room for disabled fans to sit with their own fans away from home.”

Uefa and Paris St-Germain both declined to comment while the investigation into the allegations is ongoing.

Rutherfords Lose Application For #BedroomTax Legal Challenge

May 30, 2014

I’ve just read that the Rutherford family have lost their bid for a legal challenge to the bedroom tax.

 

My thanks to ITV news for the coverage. I can’t find anything on the BBC about this.

The PIP assessment hoax shows we could believe any claim about our corrupt government

May 30, 2014

Mike Sivier's avatarMike Sivier's blog

[Image: Getty Images] [Image: Getty Images] It seems some of your favourite bloggers – including Yr Obdt Srvt – have been hoodwinked by a hoax claim that assessment criteria for the new Personal Independence Payment have been made much more severe than has been the case until now.

If you were distressed by this article, please be reassured that – from what has been said over the last few hours – it is not accurate.

Vox Political only published the claims because they came here via a colleague of good character who in turn received it from a trustworthy source. There were telltale signs that it was a wrong ‘un – for example the fact that the story is based on unsubstantiated information allegedly provided by an anonymous Atos employee to an equally anonymous source – but here at VP it was felt that the possibility of another DWP betrayal merited a mention.

View original post 549 more words

A Poet’s Poetic Tribute To Maya Angelou

May 29, 2014

Yesterday, after the sad death of Maya Angelou, several of her poems started circulating online. One in particular, Caged Bird, reminded me of a particular issue some disabled children face, when teachers and parents wonder how and why they learn and store knowledge from an early age.

The answer, of course, is that disabled children are ‘caged’ in wheelchairs, and ‘trapped’ by the restrictions of disability. They are not able to do many of the things non-disabled children do at a very young age.

So, in tribute to a great poet, I, who can only dream of following in her footsteps, rewrote her great poem.

Thank you, Maya Angelou, for using your talents to put the thoughts of so many into words. You may be gone, but your writing lives on. RIP.

 

I Know Why The Disabled Child Learns

A healthy child leaps
And jumps in the wind
Swims in the stream
Till the current ends
And bathes his face
In the orange sun rays
And dares to claim the fresh air.

But a child that sits
In a four-wheeled cage
Can seldom see through
The spokes of rage
His hands don’t move and
His feet are tied
So he uses his brain to learn.

The disabled child learns
With a keen interest
Of things unknown
He always does his best
And his knowledge is stored
Till some future time
When his efforts will
Bring him freedom.

The healthy child thinks of playing in the breeze
And chasing soft winds through the sighing trees
And squashing the worms on the dawn bright lawn
He names the world his own.

But a disabled child sits and has his silent dreams
He cannot shout, though in his mind, he screams
His hands don’t move and his feet are tied
So he uses his brain to learn.

The disabled child learns
With a keen interest
Of things unknown
He always does his best
And his knowledge is stored
Till some future time
When his efforts will
Bring him freedom.

 

 

DWP Turns Nasty On PIP Claimants- UPDATED

May 29, 2014

I am reposting this after reading the clarification on why it was originally published. The intention of the original publishers was not to cause worry or distress to readers- that is not my intention either.

 

A number of comments below have suggested that that this article may be inaccurate and scaremongering. Their concern is that there is no legislative underpinning to the suggested changes.  We did not write this article nor did we speak directly to the ATOS source.  You will need to make your own judgement about whether what you read below is accurate. 

We did speak to the author and felt that they were genuine in promoting this article.  They are a well respected disability activist known to two leading disabled person’s organisations.  We do not believe they would deliberately set out to mislead.  

A number of things about the context for the article are important to think about.  The government’s flagship problem of welfare reform is in a difficult place.  With a general election only a year away, Universal Credit has stalled and PIP is drowning in a huge backlog of claims that cannot be processed because of the length of time assessments are taking.  In this it strikes us that it is reasonable to suppose ATOS management to be looking at ways they can speed up assessments of the backlog.

It is in this context that we think there is merit in this article.  Some things such as treating people who arrive in wheelchairs as fully mobile are unlikely. But others such as only taking into account prompting when it actually happens not when someone says they generally need this seem much more likely.  Much of an assessment like this is down to the interpretation of the Health Professional and it would not be surprising that managers were trying to control that process.  

Will some of these changes speed things up?  Yes.  Would that allow IDS to claim some sucess? Yes.  Would there be a lot more appeals?  Yes.  Would the government care?   

That is why we published it.   If you still want to read the original article after all that, bear in mind that at this point its accuracy is disputed and Click the Read More button below.  

 

One source was contacted this evening by A Friend of long standing who is a Manager at ATOS.  They are a registered Nurse and have responsibility for PIP assessments.  For the sake of their job and their well being they have asked that they remain anonymous.  One source can attest to their veracity.

As you may be aware, PIP (Personal Independence Payment) Assessments have a long-recorded backlog.  In February this year, it was announced that these assessments has a backlog of around 80,000 people.

This news was eventually recorded by the Press and acknowledged by the DWP,  Accordingly, ATOS were charged with increasing their efforts to alleviate this backlog and permission was given by the DWP to enable assessors to do Paper Based Reviews (PBRs) of claimants.  If it was deemed that a person’s description of their needs caused by their disabilities, matched the medication they were prescribed and the condition with which they were diagnosed, then the assessors were able to award points for the descriptors for which that person claimed without the need for being seen face-to-face.

However, as of 15th May despite the adjustments, the backlog has grown to over 145,000 people waiting for PIP assessments.  The DWP, by law, is required to assess people within 18 weeks of initial application and many people were breaching these 18 weeks, causing some concern to those at the DWP, as this gives claimants a right of complaint and appeal, potentially.

Today, A Friend was summoned to a meeting of high level managers within ATOS.  Prior to entry into the meeting room, A Friend was searched by security to ensure that no-one entered with any recording device, mobile phone, tablet, pen, paper etc.

They revealed to our source the information that was given to the ATOS managers at this high level meeting.

Paper Based Reviews (PBRs)

From today – 23rd May 2014 – ANYONE who has had a PBR during the past three months will now be RECALLED for a face-to-face assessment.  Any claimants who have been awarded benefits based on a PBR may have their benefits stopped for the duration of the assessment period, and if their disabilities no longer match new clarification “guidelines” the DWP has issued in a new directive as of today, it is expected that they will be asked to repay all monies they have received.

“Clarification” changes to PIP descriptors

From Tuesday 27th May 2014 – ALL claimants will now be subjected to NEW descriptors which the DWP is insisting are merely a ‘clarification of existing guidelines”.  These descriptor clarifications have been issued with no consultation as is legally required.

Changes to the PIP descriptors assessors must now adhere to include the following:

1.  The legal application that all claimants MUST be able to do activities safely, reliably, repeatably, sustainably and in a timely manner must now be ignored.  This is no longer to be taken into account.  If a claimant can do the assessing task (ie: walk down a step unaided) once, then they must been deemed fully capable of doing that task and assessors are instructed to award them 0 points for that descriptor.  This is particularly problematic in the case of those with varying mobility needs as if they can walk say, 90 metres one day or at a certain time of day, then assessors must now deem them to be fully mobile and score 0 points.

2.  Claimants who have neurological or mental illnesses who require “prompting” or reminding to do tasks or activities are no longer to be awarded with points.    Prompting is no longer to be taken account of by assessors unless there is legal evidence of need such as carers being made available to that person 24/7.

3.  ALL medical needs must now be evidenced by LEGAL documentation.  No longer are assessors able to take as supporting evidence the accounts of care staff, social workers, support workers and carers etc.  Safeguarding recommendations are also no longer allowed to be taken into account unless there is strong supporting evidence of need. Assessors can ask if a claimant has a need for such support but claimants MUST provide evidence that they are receiving the support now.   Unless a claimant can evidence that they have an actual NEED for support, then assessors will not be able to take this into account and the claimants will be awarded 0 points on the descriptors.

4.  “Clarification” of some of the descriptors

Examples were given of clarifications (which are actually changes) to the various descriptors, which make for very bleak reading indeed.

Descriptor 1 (cooking)

Previously, for anyone who was recorded as “suicidal” or at risk of self harm with unsupervised access to a kitchen, was deemed to be at risk.  For the purposes of the PIP assessment, the kitchen (containing sharp objects, knives, gas ovens etc.) were deemed a “special place of safety” and anyone with an evidenced risk of suicide or self harm would have been given maximum points.  From today, the DWP directive states that this is no longer relevant.  Anyone with suicidal tendencies/who self harm will no longer receive points for cooking.  The DWP has stated that because they could also be at risk anywhere in their home, (by smashing a tea mug in the lounge, which they could then use to slash themselves with, for example) they can no longer deem the kitchen to be a “special place of safety”. 

A Friend went to some great length to point out that ATOS staff argued long and hard for this descriptor to be changed IN FAVOUR of vulnerable claimants.  These qualified doctors and nurses felt that the descriptor was too rigid for suicidal claimants and wanted to include bathrooms as a “special place of safety” also.  However, the DWP has gone in completely the opposite direction and now taken away that assessable safeguard.

Descriptor 3  (Care in a care home)

Previously, the DWP had stated that assessors were NOT allowed to take account of medications or therapies given to residents in care.  They had argued that, because of the care support they received in Care, this meant that they should not therefore be awarded extra disability money to support them with this activity.

However, as of Tuesday, this will now change.

Assessors are now allowed to take account of a claimants needs for medication, therapy (such as Physiotherapy etc.) and award them points accordingly.  It is believed that this is because of the awarding of the right for care home residents the protection of the Human Rights Act as of last week.

Descriptor 7 (Communication)

The DWP has “clarified” the descriptor on communication.  If a claimant is able to express a need using simple words such as “I need the toilet” – even IF these are the only words the claimant is able to say, they are to be deemed by Assessors as

FULLY COMMUNICABLE and will be awarded 0 points.

Descriptor 8 (Reading)

A claimant is to be assessed as being able to read and write with no impairment if they are able to read a simple sentence such as “a cat sat on a mat”. 

If the claimant is able to read two simple sentences, such as “stick out your tongue.  Lift up your arm.”  and carry out the instruction they have read they will get 0 points for reading impairment.

If a claimant is able to use Makaton symbols and other signs or aids to communicate and can use these to follow out a similar simple instruction they will have to be assessed as FULLY CAPABABLE and will receive 0 points.

Descriptor 9 (Engaging)

I have already described how safeguarding recommendations by non-medical professional will not longer have to be taken into account unless legally and medically evidenced.  Under this descriptor, only EXCEPTIONAL circumstances which can demonstrate a clear threat to the general public (not to the person themselves) can points be awarded now for engaging. 

The claimant MUST now produce clear legally verifiable evidence that they are indeed such a threat.  The evidence that will be accepted includes:

– A criminal record for such actions

– Having been sectioned and detained under the Mental Health Act

All other evidence, including prompting to do activities must be ignored by the assessors and such claimants will be awarded 0 points. 

Descriptors 9 through 11

From now on, only those claimants who have been ASSESSED for and provided with FULL time care – whether via paid or unpaid carers will be awarded points.

Claimants must either be in full time residential care or have the support of a carer 24/7 in order to get an award.

Descriptor 10 Budgeting and money handling

Claimants will from Tuesday ONLY be awarded points if they have an appointee, power of attorney for financial affairs, or some similar arrangement.  Unless a claimant can demonstrate that they are completely unable to manage their finances they will be awarded 0 points.

Once again, safeguarding recommendations by social services or care support will no longer be taken account of.

Descriptor 12  Mobility.

As of Tuesday next week, the requirement that claimants must be able to walk fewer than 20 m safely, reliably, repeatably, sustainably and in a timely manner without pain will NO LONGER APPLY. 

If any claimant is able to access an ATOS assessment centre EVEN IF IN A WHEELCHAIR they will be deemed fully mobile and score 0 points automatically.

The DWP have said that the directive WILL be available to anyone from Tuesday under Freedom Of Information Act requests.  They may contact the PIP help desk and request a copy.  Staff are to inform them that the copy “may take between 3 and 6 MONTHS” to arrive.

A further change to PIP assessments has also been implemented by the DWP.  A few months ago, the DWP ran a pilot programme where DWP CALL CENTRE staff – who are not medically trained – were given 200 claimants cases to assess and act as Decision Makers on their cases.

Despite protests from both DWP staff and ATOS staff, the DWP has now decided the Pilot was a ‘success’ and from Tuesday this programme will be rolled out in full for all claimants.  Claimants will no longer be able to guarantee that their claims will be decided by fully trained DWP decision makers.

ATOS staff wish to make it known how deeply distressed and unhappy they are at these changes.

Our source can attest that this is a true statement as it was told to them. 

Our source is  passing this information to you in order that action can be taken to prevent a potential humanitarian disaster from occurring for the disabled population of the UK.

 

Updated 30/5: This appears to be a hoax, thankfully, for now. However, this is why I believed it, and why it will stay here, as a reminder to me not to immediately believe everything I hear.

Stephen Hawking’s Formula For England Winning #WorldCup2014

May 29, 2014

As Stephen Hawking arrived on stage in the basement of the Savoy Hotel in London, Peter Crouch robot-danced on the screen behind, Chris Waddle skied a penalty, and a Prodigy soundtrack thundered a helpful reminder to the waiting journalists: “Exhale, exhale, exhale.”

It was not an obvious environment for the Cambridge cosmologist, who as former Lucasian professor of mathematics held the position once occupied by Sir Isaac Newton. Hawking, a Fellow of the Royal Society, was here to tout some formulae he had drawn up for a bookmaker on England’s chances of success at the World Cup in Brazil. If it were anyone else, the room probably would have been empty.

Hawking was approached on the understanding that a theoretical physicist might be marginally better qualified to make predictions than Paul the Octopus, the eight-armed oracle that rose to fame by correctly selecting all the winners through its eating habits during the 2010 World Cup. The German cephalopod died three months after the final whistle.

“Ever since the dawn of civilisation, people have not been content to see events as unconnected and inexplicable,” Hawking began, before launching into his results. “They have craved understanding of the underlying order in the world. The World Cup is no different.”

One aspect of England’s scratchy record in World Cup penalty shoot-outs since they won the trophy in 1966 perhaps doesn’t require a knowledge of high-level mathematics. “As we say in science,” Hawking put it, “England couldn’t hit a cow’s arse with a banjo.”

Scientists have a long, inglorious history of churning out often meaningless equations for sponsors. There are formulae for cups of tea, strawberries and cream, and the most depressing day of the year. All are commissioned by companies as PR stunts and their value ends there. They are overwhelmingly drawn up byscientists whose names are unknown to any Nobel committee.

Hawking, who may yet win a Nobel prize for noticing that black holes can evaporate, was asked by the Irish bookmaker, Paddy Power, to spend a month looking at England’s World Cup performances and draw some conclusions. The company’s spokesman, who happens to be named Paddy Power, said he had not expected the world-renowned scientist to agree. “We thought there was a 1% chance he’d say yes. But he did. I was totally surprised,” said Power.

To work out the conditions that suited England’s football players best, Hawking (or perhaps his students) analysed 45 World Cup matches the team had played since their last tournament win in 1966. They also analysed 204 penalties taken in penalty shoot-outs, a particular weakness for England.

Hawking said the factors affecting England’s performance – though surely this applies to any team – can be broken down into five areas: environmental, physiological, psychological, political and tactical.

The team fared better when playing in stadiums less than 500 metres above sea level, the scientist said. Temperate climates helped too, with a five degree Celsius temperature rise more than halving England’s win rate. “The game in Belo Horizonte against Costa Rica is the best of a bad bunch, with England’s opener in Manaus against Italy the most difficult. The searing temperature and late kick-off are far from ideal,” Hawking said.

Temperature formula

On the psychological front, England have a better record wearing red than white shirts, perhaps because red can make players feel more confident and appear more aggressive, Hawking added. England normally play a 4-4-2 formation, but 4-3-3 has been slightly more successful in the past, with 58% of matches won. Under 4-4-2 England won 48% of matches.

England have taken part in three World Cup penalty shoot-outs since they were introduced in 1978, and lost every time. Hawking’s tips for success may not be news to the England players. Placing the ball in the top left or top right corner of the net – more easily done with the side of the foot – is a winning strategy. But speed plays its part: “Get a runup of more than three steps. Give it some welly,” the Professor added.

4-3-3 v 4-2-2

Neither the age of players, nor whether they were left or right-footed, seemed to make much difference. “But bald players and fair-haired players are more likely to score. The reason for this is unclear. This will remain one of science’s great mysteries,” Hawking said.

The scientist’s report brings the statistics together into two multi-term equations intended to predict the team’s future success, but from the start, Hawking sets the tone for how the work might be regarded. Opening the report, he writes: “It is widely accepted in the field, that a key factor of achieving World Cup champions status is winning matches.”

He concluded that England need to wear red, play 4-3-3, kick off in the afternoon and avoid referees from South America to best succeed in Brazil

Kick-off time

Power refused to divulge how much the bookmakers had paid Hawking, but the scientist said he split the fee between two charities, one devoted to saving children in Syria, and the other to motor neurone disease, the condition Hawking was diagnosed with as a student.

Jim Al-Khalili, a physicist at Surrey University, said the statistics were fun but he considered Hawking’s equations “meaningless”. He took particular issue with the formula for the perfect penalty.

“This is utterly pointless of course. As someone who played football several times a week, all year round, every year between the ages of 10 and 30 and who has stacked up hundreds of hours of penalty-taking practice, I can speak with some authority, if not international quality skill.”

Penalty shots depended on natural ability, practice and psychology, Al-Khalili said. “It is the third of these that the England team has suffered a lack of over the years. Any professional footballer should be able to score from the penalty spot every time, but they don’t when under pressure. England players have been psychologically less able to cope with this when compared with their German counterparts.

“None of these factors can be captured in an equation, even a computer code of the size of the most sophisticated climate models would fail to capture these factors with any level of reliability.”

Hawking confessed he did not bet on sport and was not a fan of football. “Shouting at the television is not for me, but each to his own,” he said. Pushed to name a favourite, he noted the home advantage for Brazil. “I’m sure they have enough quality to lift the World Cup for the sixth time,” he said.

Walking The Breadline

May 28, 2014

From Vox Political on Facebook:

 

From a reader who wishes to remain anonymous:
I recently came accross a FB site that is local here in Wales, and they are doing a sponsored walk from Tredegar to Parliment, to raise awareness and funds for foodbanks. Would you be prepared to post the link on your page please, to raise donations for local food banks…tinned food. They are making such a huge effort, walking 177 miles, it would be a small thing for any of us keyboard warriors to add some support, be it just making people aware of it, and maybe a few tins donated. Thanks. https://www.facebook.com/walkingthebreadline?fref=nf

World MS Day

May 28, 2014

I’ve just found out that today is World Multiple Sclerosis (MS) Day.

 

So, use today to celebrate yourself, or anyone you may know who has MS. That’s what I’ll be doing!

Saints And Scroungers Seeks ‘Saints’

May 28, 2014

An email I have just received:

 

Dear Same Difference,

 

 

I hope this finds you well. I have come across your website and think you might be able to help…? I am hoping you might have a network of people who might want to voice their story and might fit our bill!

 

I am urgently looking for suitable case studies for our new Series of BBC 1’s Saints and Scroungers. I’d be grateful if you could spread the word on my behalf to case workers on the ground, colleagues friends, workers in the field, to see if anyone has any suitable case studies or stories?

CASE STUDIES:
I am looking for good (emotional) stories, but because of this Public Purse help/ assistance they  are now in a better place. We want to demonstrate the importance of public money and where it’s working positively. There needs to be a Public Purse link somewhere. This could be that they are now getting the correct benefits, they didn’t know they were entitled, or maybe access to care/ equipment to help them train, maybe the help ( a charity or welfare officer) is helping save the public purse? e.g. less reliance on NHS full time, carers etc because of X Charity or Person. We are looking for stories with some sort of positive outcome to show the importance of the Welfare State to the rightfully entitled.

I appreciate this might sound very wide but I hope it gives you an idea of the breadth of our programme. We like to get a mix throughout the Series and the case studies we film a wide range of people with for example; Cancer, Cerebral Palsy, ADHD, Learning Difficulties, Blind people, parents with babies with rare conditions etc. We put our contributors in a sympathetic light; showing how they cope in the face of adversity as well as how and where Public Money helps millions of people.

FILMING:
We have from 1 – 1.5 days worth of filming time per story and we are looking to film asap. Our deadline for filming is late July. We usually film a backstory interview at the person’s house, then try to film them out and about or ‘doing’ something that is relevant to their story e.g. shots of them at work, getting from A to B, filming with the Carer at Home etc. If there is only 1 key person in the story- then it’s great to know if there is anyone else who would be willing to be filmed too as this really helps.


Here’s some info about the Programme:

BBC1’s flagship series Saints and Scroungers is currently in its 6th series.  The series airs on BBC1 at 11am and this series is due to air in the autumn. It is then repeated  around 7.30pm on BBC2 usually a few months later.

The Saints is side to the programme looks at those who are benefitting from the public purse, be it receiving welfare benefits for their disability, ill health, financial status or operations on the NHS – anything where money from the taxpayer pot has made a huge difference to someone’s life.

The scrounger side programme is about convicted criminals. It highlights the work of fraud investigators from local authorities, the Department for Work and Pensions, Her Majesty’s Revenue and Customs, police and economic crime units and NHS Protect. We interview investigators about cases of theft from the public purse which have already had a successful prosecution and sentence and cover how the crime came to light, how the investigation unfolded and what the sentence handed down was.

We average 1.5m viewing figures which is usually the highest in its time slot and we get excellent feedback and comments from viewers. You can view clips on line if you wish too.

Please do give me a call if you have any further questions.

Best wishes,

Gemma Delaney

 

 

 

 

Gemma Delaney | Assistant Producer | Saints and Scroungers (Series 6)
Flame TV, 4a Exmoor Street, London, W10 6BD

T: 0207 598 7336| M: 07940 207 384

E: gemmad@flametv.co.uk W: www.flametv.co.uk 

A Phone Call To The DWP

May 28, 2014

I’ve just found this and I think it should go viral, because it shows what they really think of us.

‘Work Coaches’ For 16-17 Year Olds

May 28, 2014

For the first time ever Jobcentre Plus, in partnership with local authorities, will implement a new approach that focuses support solely on 16-17 year olds who are not in education, employment or training and not in receipt of an income-based benefit.

From today, 16 and 17-year-olds will be given access to Jobcentre work coaches so that they can get individual help to find work and training, Deputy Prime Minister Nick Clegg and Employment Minister Esther McVey have announced today.

The trained work coaches will help young people navigate the wide array of services on offer and tap into local employment and training opportunities. If successful, this new way of helping young people will be rolled out across England.

The number of 16 and 17 year olds who are not in education or training is now at the lowest level since records began, with 94% either working, studying or training.

Hundreds of young people could benefit as the first part of the initiative launches today in Lewisham, Norfolk, Hertfordshire and Sheffield. Work coaches in Jobcentres will give one-to-one help from CV writing, interview skills, providing access to training or job matching.

Deputy Prime Minister Nick Clegg said:

As our economy gets stronger, we need to make sure that every single young person shares in the recovery and gets help to reach their potential.

For the first time 16 and 17-year-olds who need help to find work or training will have access to Jobcentres where they will get tailored support from a work coach.

We need to do all we can to help them gain essential skills for work so they can play their part in securing Britain’s long term success, building a stronger economy and fairer society for this generation and the next.

This radical new pilot will give young people additional support from Jobcentre work coaches, who will use their local expertise and employer networks to help reduce young people’s chances of becoming long-term unemployed. The plan will see Jobcentres join forces with local authorities, employers, charities and local community organisations to provide access to all the best opportunities for young people.

Minister for Employment Esther McVey said:

Every young person deserves the best chance in life so they can secure their future. Youth unemployment is falling and the economy is growing, so as part of the government’s long-term economic plan we need to make sure every young person gets the help they need to benefit from the improving jobs market.

Jobcentre work coaches have a huge amount of expertise, experience and local labour market knowledge, and we want to use that to help young people get their foot in the door to the career they want. Together with local authorities, employers and charity groups we want to make sure that young people, from all walks of life, have got the networks, the role models and the confidence to succeed in the growing economy.

Every young person is different, so the support they receive will be uniquely tailored to them. Jobcentre work coaches have a huge amount of expertise and have seen great success supporting over 18s into work, which is why this system is being trialled for young people.

Support on offer through Jobcentre work coaches could include work experience, work taster courses, pre-apprenticeship support and meeting with employers to get a window into a wide variety of sectors and roles. They could also help with employability and work preparation, training focusing on career aspirations and team building. If needed, they’ll also work with organisations like the Prince’s Trust and other providers to ensure young people can get valuable skills and experience.

The number of unemployed young people fell by 48,000 in the last 3 months, and has been falling now for the last 8 months. It is down by 75,000 since 2010 and youth unemployment excluding those in full-time education is now at its lowest level since 2008.

More information

The Deputy Prime Minister announced this pilot in a speech in February

Currently, in rare circumstances, some disadvantaged 16-17 year olds who are claiming benefits are helped by Jobcentre Plus. This pilot is for 16-17 year olds not participating in education, employment or training (NEET) who are not claiming benefits. Participation on the pilot will be completely voluntary.

The pilot will run for up to 18 months and will be extended in the autumn to include a further 25 local authorities.

NEET figures released last week showed that 94.2% of 16 and 17-year-olds are participating in education and training, the highest comparable participation rate since consistent records began in 2001.

These pilots build on the offer to young people through the 16-17 year old Youth Contract, which specifically targets young people who are NEET and who are considered to be disengaged or hardest to reach and support them into education, training or a job with training.

Website Scams Disabled Woman Into Paying £49 For Blue Badge

May 28, 2014

A pensioner with a spinal disability has slammed an internet scam which conned her into paying £49 for a disability badge that never arrived.

 

Great grandmother Joan Smith, 81, from Fulwood, Preston, was left distressed when she was tricked into paying a dubious website to apply for a Blue Badge, which assists disabled people to park more easily.

Making an application is free, and the badge costs up to £10 – but she was told it would cost £49.

Joan cares for her husband Sydney, 82, who has Alzheimer’s, and daughter Judith, 51, who has mental health problems, as well as coping with her own painful back problems.

She applied for the badge because her condition means she can not walk far.

Today Joan, who used to work at Peter Craig’s mail order firm at Tulketh Mill, said: “I ordered Sydney’s badge online for him last year wuth no trouble. But I need my own for when I have to leave him at home as I can’t use his.

“I feel angry and cheated – but I’m angry at myself for losing the money.

“I want other people not to fall victim like I did.”

Joe Bradley, executive director of Northgate Public Services, which manages the blue badge service, said: “We are concerned there are new websites out there misleading people into thinking they have to pay £49 before they can even apply for a Blue Badge. This is not the case. We would like to assure potential applicants that the application process is free and the best way to apply is via your council or the official Blue Badge website http://www.gov.uk/apply-blue-badge.

“Unauthorised websites are preying on vulnerable, disabled people and taking advantage of what is a beneficial service.”

Disabled People’s Employment Rates, By Type Of Impairment

May 27, 2014

 And type of employment/profession, revealed by an FOI request.

BBC Ouch Podcast: The Single Disabled Woman Who Adopted A Disabled Child

May 27, 2014

There are a lot of good things on the latest Ouch! podcast, as always, but the part that caught my attention was about Lesley:

Lesley has adopted a disabled toddler with complex needs – a fact made remarkable because Lesley is herself disabled, single, and uses personal assistants in her own day-to-day matters. Lesley, who’s in her 20s, tells us she adopted her because she feared the child would spend the rest of her life in an institution.

Her section is about 17 minutes in. You can listen by clicking the link above, or here is a transcript of the section:

So Lesley adopted 17 month old Rachel, a disabled child with complex needs and has had her for about eight weeks now. We hear adoption is a difficult process with multiple reasons why you may be rejected as a potential parent, but this didn’t stop Lesley who felt strongly she had the ability and love to adopt. Lesley is 28 and believes she’s the first person to adopt who’s disabled, who uses personal assistance for her own care purposes and who is single. Many would think that there’s already plenty of room for rejection or discrimination, but let’s also add in that she’s gay, Jewish and in her own words, not entirely Caucasian. Now wow, Lesley, I think you might be the most minority person we’ve ever had on the show. Can you tell us a little bit about Rachel, what’s she like?

Rachel is now 17 months so she was 15 months old when she came home. She is a very easy-going smiley little girl who has a severe physical impairment and visual impairment as well as a few other bits and pieces. When I received her profile, unlike other children where it says about their interests, what they like, what sort of things make them smile or whatever, Rachel’s was a list of medical needs with nothing really to say anything about what she’s like as a person. And so it’s been a bit of a voyage of discovery since she’s come home for me to get to know her because I was starting with nothing. And what I found is that she’s a cheeky, nosy, perky, fantastic little girl who is also severely multiply impaired.
And is that who we can hear gurgling away in the background there?

Yes indeed, that’s Rachel’s breathing. That’s about as quiet as her breathing ever gets.
And is she chatty? What’s she into?
She absolutely loves our cats and gets massively hysterically excited whenever there’s a cat within her sort of field of vision.
Great.
She plays a lot, she likes a lot of the usual sort of baby games and stuff.
So what made you decide to choose a child who had these additional needs?
I grew up round other disabled kids. Although I benefited from an inclusive education and was not discriminated against as a child particularly because I was minimally impaired as a young child I grew up round other disabled kids and this then sort of merged seamlessly into helping look after disabled children as I moved into adulthood. I did bits and pieces supporting my friends as a child and then moved into looking after kids. So actually the majority of my experience caring for children is caring for disabled children. So just for starters that’s what I’m more used to is looking after disabled kids but also I spent a period living in a nursing home a few years ago when my housing needs meant that my local authority were not able to accommodate me for a period of time. And while I was living in that nursing home which had a young adult unit a lad arrived who’d just turned 19 and had therefore, as was then, just aged out of the foster care system. They dump kids at 19 years old if they’re disabled, I think even younger if they’re not. And so he turned 19 and was promptly dumped in a nursing home. I realised then having already been thinking about becoming a parent and realising for other reasons that adoption was likely to be the best way for me to become a parent that disabled children who aren’t adopted will land straight in institutions.
So when you saw Rachel you thought I don’t want this to happen to her, is that what made you do it?
Not so much for Rachel as an individual child but in the general idea that I could parent a disabled child and achieve as part of that that at least one child more would not end up in an institution.
Now is it right that you originally wanted to become a foster parent rather than an adoptive parent?
That’s right, yes. I initially, mistakenly, thought that being a foster carer would work better for me. Now as I’ve understood the whole system better it’s become clear that that’s not the case, and that actually being a foster carer is an immensely difficult job that I’m not particularly well cut out for. But I didn’t know that at the time. And I got quite a long way into the sort of early process of applying with an organisation that specialises in finding foster carers and adoptive parents for disabled kids and they were very, very positive about the idea of having me as a foster carer until their board of directors realised that there was a very high chance that local authorities would discriminate against me as a foster carer and would not want to place children with me for foster care, and therefore there was a risk that the charity would invest a huge amount of money training me as a foster carer and then be unable to use me if no local authority would place children with me.
So you thought that it would be easier to foster and not do the kind of long term commitment but in the end it turned out the opposite way round?
Yes, I thought that the safety net for children of remaining in the foster care system meant that I didn’t have to worry for example about my own long term health which at the time I believed that I didn’t have a great long term prognosis. This is several years ago and that’s now also turned out not to be the case.
Then you did decide to adopt in the end. What made you change your mind?
After the sort of foster care application came to an end I’d pretty much given up, but a few of my friends new that I’d been interested. I got a text one day saying were you still interested in fostering or adoption because I’ve heard about this little boy. That became the early stages of a specific application to be considered as a potential foster, or as it turned out, adoptive parent for that child in particular. That didn’t work out in the end, I believe for discriminatory reasons although I will never be able to investigate or prove that, but after that ended I had by then really become attached to the idea that I could be a parent by adoption and it was a very nasty shock when it ended. And I was then by the same friends that had told me about this little kid in the first place encouraged very strongly to get straight back on the bike in March last year.
So it’s taken about a year to get through that process then. Was it quite tough to get approved?
Actually no, it’s been an incredibly positive experience for me. I was lucky to be assigned a social worker who had recently been involved in placing for adoption a child with a family where one parent is a PA user. So that social worker obviously immediately understood the basics of what being a PA using parent would mean, which is always a good start, and she was incredibly positive about me as a potential parent and could see very quickly that it could work. And so that turned very quickly into a formal application.
So to cut a long story short, I know that in November last year you finally got your parental passport shall we say and then you went to something which to me sounds in equal parts fascinating and slightly horrifying called an adoption exchange day. So can you tell me a little bit about this?
That’s right. Exchange days are when groups of local authorities who work together to find parents for children that need them and children for parents that need them get together to share all the profiles of all the kids and all of the prospective parents that they’ve got. Each local authority will attend with a load of profiles, A5 leaflets or similar and big blown up photographs of their children and of the prospective families.
So it sounds like a kind of trade fair almost. This seems a little bit distasteful, you’re treating children who need to be adopted and you’re selling them in the way that you’d sell, I don’t know, double glazing.
Pretty much, yes, although I must in fairness point out that the parents get exactly the same treatment. So then this space is, you know, each local authority has a table with the profiles on it, staffed by one of their social workers, and roaming around are adoptive parents with their own social workers looking at children’s profiles and children’s social workers looking at all the parent’s profiles.
Okay, so there’s lots of glossy photos, there’s lots of social workers giving you the hard sell, this child is fantastic, it’s a perfect addition to your home. It does sound like a furniture sale. So how was Rachel being sold shall we say? I hate to use that phrase but what was the promotional material for Rachel like?
One of the things that really started us on the path that made me realise that Rachel might be going to be my child was that she was being sold, advertised, for want of a better word, very badly. They’d used a tiny black and white photo of her, the size of a passport photo, nothing else, which showed her aged at perhaps six months so it’s an old photograph, fast asleep with a tube in her nose. So nothing of her personality or her sparkle was shown at all.
So why was such little effort made to, like you say, advertise her, compared to the other children?
I really don’t know, maybe I never will. I got angry on her behalf, this child I don’t know whose photo I’ve only seen once, I got cross.
And so that was a… It seems like a strange emotion to make you want to adopt a child, usually it’s some sort of instant love or bond, but it was anger that actually got you close to Rachel?
It is a bond though. If you’re feeling cross on someone’s behalf, if you’re angry on a child’s behalf then that’s a degree of sort of parental defensiveness that I think doesn’t often happen very, very early on.
So let’s fast forward to when you actually first met her, Rachel we’re talking about, tell me what she was like. What was the first encounter like, where did it take place and what was she doing?
I met her for the first time at her then foster carer’s home which was out in the middle of the countryside, a very, very long way from where I live. When I arrived she was crying in the next room and they eventually brought her through and just kind of plonked her on my lap. I should add that adoptive parents don’t normally meet children before the process of matching child and parent has been completed, this was a bit of a one off and probably shouldn’t really have happened. And at that point, this is now a good four months ago, Rachel was silent and passive. She lay in my arms and looked up at me, she barely moved and she didn’t make a sound, didn’t smile, didn’t do anything really.
And how did that make you feel? Was it what you were expecting?
From the profile that I’d read of her it was within what had been described in the profile.
And was there that instant bond, that instant maternal love? Did you feel that the moment that she was like you say, plonked in your lap?

I did. I’d already… the thing of getting angry on her behalf had already happened again by that point because she’d been left crying in this other room while all the adults talked because her social workers were there as well. And I sat there getting more and more furious that this baby was crying in the other room and I was sat there listening to her and I couldn’t do anything to make it better, I couldn’t even get into the room that she was in.
So this was the first time that you actually felt I can actually now do something with this anger, I can turn this into something positive and loving.
I think it had probably already started by that point, that sensation of this really could be my child. It’s very weird with adoption because you’re looking at profiles of children and asking yourself is this my child that I’m now looking at? And you might go through that process with ten or 15 children’s profiles.
So let’s quickly before we finish, I’d love to talk about this a little bit further, but very quickly, obviously Rachel’s with you now, we can hear her, we’ve been hearing her throughout this conversation, she seems very, very calm and happy, so what is it that you do and what do your personal assistants do? How is the work of being a mother split?
Right. Well I’m her mum and they’re not, so the work of being a mum is my job. They support me and I care for her basically. This will not remain so straight-forwardly the case as she grows up because she will herself need personal assistant support as a young person when she’s bigger, but at the moment the nappies, the feeds, the medications, the waking up in the night is all mine, but my PAs’ jobs in addition to what they were doing before now include rather a lot of fetching nappies, nappy bags, syringes, retrieving dropped toys, almost infinite loops of picking up slippers that Rachel’s levered off on the edge of her buggy, as well as all the stuff that they were already doing to support me and meet my needs of just sort of generic 24 hour PA stuff.
Well I know Barbara, I’m just going to bring Barbara in for a second, I know you have a daughter who’s an adult now, I mean does Lesley’s story here ring any bells for you as somebody who brought up a daughter as a disabled woman yourself?
Oh yeah, yeah, there’s a lot of things I recognise, I mean my daughter was a non-disabled child but it was interesting because she figured out quite quickly the stuff I couldn’t do, even when she was a few months old. So she used to cling onto me. You know like most babies are just dead weight, they’re just idle, they won’t do anything for goodness sake, and so she figured out that if she wanted to be picked up she’d have to hold on a bit, give me a hand.
Rachel does that as well actually, it’s great, she’ll really hang on. Once I put her up on my shoulder I can let go and she’ll stay there.
Yeah, exactly. I think they figure it out really quickly and what you’ll get is just years of great stuff. I mean I think being a parent is amazing, and it’s still amazing, you know, even when they’re older. And my one cooks for me now, I mean I couldn’t ask for more, she’s learning to be a chef and I just get the best food ever. So stick with it.
Good work. Good work training up a chef.
So it seems Rachel’s in absolutely no doubt whatsoever who her mum is, you’re taking on so much of the load yourself.
Oh yeah no question, but no PA user’s child ever wonders whether the PA’s their parent and I don’t think the fact that Rachel is being adopted is changing that really because there’s the same clarity that I am the face and the voice and the hands that’s here all the time. Every time she wakes up I am within the three or four feet of range where she can see me, every single time.
Well thank you, Lesley, for your story, it’s absolutely fascinating.
It’s an amazing story, thank you so much.
 

 

‘Growing Numbers’ Of Blind Children In UK, Finds Study

May 27, 2014

The number of blind or partially sighted children has increased due to a rise in survival rates of severely premature babies.

According to the charity Blind Children UK, the earlier a child is born the greater the risk of vision impairment. One in 20 children born severely premature is likely to be blind.

There has been a 9% rise in the number of children registered blind or partially sighted since 2006. Among under-fives the number has gone up by 12%.

The charity says despite increasing numbers of children being affected, a quarter of parents said they had to wait longer than a year for their child to be diagnosed.

Sally Freeman from Blind Children UK said: “The child won’t know they have a visual impairment and if it’s the first time for the parents, then they won’t know there’s a visual impairment involved.

“So the child could have a visual impairment for a while before they are diagnosed.”

Fadzie Karima has no sight in her right eye and tunnel vision in her left eye.

The 13-year-old told Sky News: “I usually bump into stuff if I’m not being careful and it takes more concentration to do things like writing or using a computer.”

She was diagnosed with juvenile glaucoma two years ago. Her mother, Ericah, wishes she had noticed sooner that her daughter was having difficulties.

“Had we gone for regular eye tests it would have been picked up a lot earlier but I didn’t see the need for it,” she said.

She is backing a campaign to urge other parents to get their children’s eyesight checked.

The campaign also has the backing of Lord Holmes, the blind Paralympic swimmer.

He said: “Every day four children in the UK are registered blind or partially sighted.

“Sight loss can leave children feeling isolated and afraid – I know this from personal experience.

“Blind Children UK helps gives children the skills, confidence and support to enable them to enjoy their childhood and reach their potential as adults.”

Post Winterbourne View Transfer Plans A ‘Failure’ Says Minister

May 27, 2014

Fewer than one in 10 people with learning disabilities who were due to be moved out of hospitals in the wake of the Winterbourne View scandal will have been transferred or have a date for doing so by a deadline set for the end of this week.

The transfer programme, branded an “abject failure” by the minister responsible, has been dealt a further blow after the man drafted in to breathe new life into it became caught up in an abuse inquiry.

Bill Mumford has offered to stand down because of the police investigation into abuse claims at the Womaston residential school for children with learning disabilities run by his charity, MacIntyre, in Powys. The charity is to close the school in July. Norman Lamb, care and support minister, said that “on balance” Mumford should continue in his national role.

The Winterbourne View scandal broke three years ago when BBC’s Panorama broadcast secret filming of people with learning disabilities being ridiculed and abused at a private hospital near Bristol. Eleven staff were subsequently convicted of offences, six receiving jail terms.

After the controversy, ministers ordered a review of the use of facilities similar to Winterbourne View, where fees were an average £3,500 a week. It was calculated that more than 3,000 people with learning disabilities were living in hospitals in England despite the closure of all NHS long-stay institutions and a longstanding presumption against hospital care.

A programme was put in place in December 2012 to provide the individuals with “personalised care and support in appropriate community settings” no later than 1 June 2014. But latest official figures show that of 2,615 counted in a survey at the end of March this year, just 182 will have moved by next weekend’s deadline and only 74 more have a date for transfer.

Lamb has made no attempt to hide his anger at the slow progress, acknowledging the programme has proved an abject failure and describing it in an interview with the Health Service Journal as “utterly hopeless” and his “most depressing and frustrating task”.

Mumford, chief executive of MacIntyre for 18 years and one of the most respected figures in the learning disability sector, was brought in this year on a four-day-a-week contract to try to revive the programme. He is warning privately that not only will the 1 June target be missed, but it will be impossible to get anywhere near it before next year’s general election.

The main problem is that in 1,702 of the outstanding cases identified in the March count, including 534 placements in secure hospitals, doctors say the individuals are not ready to move into the community because of illness or the challenging nature of their behaviour.

This in part reflects a lack of suitable community-based care and support schemes for people with profound disabilities. But critics say it reflects also a lack of creative thinking and enthusiasm for the programme on the part of health professionals, local care commissioners and, at least until recently, NHS England.

In a statement, Lamb said it was “absolutely unacceptable for people to be left in institutions if they are able, with support, to live in their own community”.

The minister added: wanted to see “real change of pace” in the programme over coming months. “A complete culture change is needed, so that we end the scandal of people staying inappropriately in institutional care.”

On Mumford, Lamb said: “My best understanding at this time is that MacIntyre has dealt with the [Womaston] situation swiftly and appropriately.” It was, on balance, “in the best interests of everyone involved in the programme for Bill to continue in his leadership role”.

Putting On A Brave Face With Bell’s Palsy

May 27, 2014

Teacher Marvin Grubb woke one morning with a pain in his neck. Hours later, the right side of his face had collapsed, leaving him unable to close one eye or use the right side of his mouth. He rushed to hospital fearing a stroke, but was eventually diagnosed with Bell’s palsy.

“I was unable to drink, struggled to eat, and had to tape my eye down when I went to sleep. It was a very cold winter and my eyeball froze in my skull. I’d watch my son play football and the wind would blow directly into the eye, because you lose the blink reflex. You don’t realise how much you use it until it is gone.”

While facial palsy – a weakness of the muscles in the face caused by nerve damage – can be physically debilitating, the emotional blow is often harder to bounce back from. Losing the ability to express positive emotions such as joy, love and kindness, or being unable to greet a friend or loved one with a welcoming grin can be devastating

Grubb, 41, a decorated Gulf war veteran, has learned to live with his new face. Others, though, are still struggling to come to terms with what he describes as a “visual hell”. Friends frightened by his deformity have stopped talking to him, strangers unable to read visual cues stare in horror and even his girlfriend has nicknamed his crooked profile his “mean side.”

 

For two months, he struggled to speak without lifting his face with one hand, and he still fights to find the words to describe the impact facial palsy has had on his confidence and self-esteem. “There is nowhere to hide,” he says. “Everyone can see it on your face and you can’t cover it up.”

There are at least 30 different known causes of facial palsy, from tumours to head trauma. Bell’s palsy is the most common and is a condition whereby the inner ear becomes inflamed, resulting in pressure on the facial nerve. This, in turn, causes facial paralysis on the affected side. It can strike anyone, at any time.

Kelly Lynskey, though, was born with the nerve damage and has never seen herself with a “normal” smile. She says she used to hold a mirror to her face to reflect her good side and see what a full smile would look like. Like many with the condition, Lynskey, now 40, feels self-conscious and embarrassed about how her mouth turns up on one side when she tries to smile, and avoids being photographed.

She explains that, even though her demeanour is generally happy, strangers find it hard to read her facial expressions. “Because I grew up with the condition, I am aware of my facial palsy every day,” says Lynskey. “So if I meet someone different, I am always bubbly and try to not make people notice. Instead, I try to make jokes to take the focus off my face. It does hurt when people make comments but I’d rather laugh with them than be laughed at.”

Years of bullying at school took their toll though and, at the age of 15, she decided to undergo surgery to bring movement back to her face. But the procedure – which involved grafting muscle and nerves from another part of her body on to the affected side of her face – failed to give her the smile she longed for. After another unsuccessful attempt, the doctors discharged her and she was left to cope with the condition, leaving her feeling isolated and alone. Only with the help of online support group Courage to Smile has she found the confidence to search again for surgical solutions.

Lynskey’s feeling of abandonment by the health system is not an isolated case. Ignorance among GPs about the condition and treatment for facial palsy continues to be a major concern. That is despite treatment such as physiotherapy, or even Botox, which have been shown to make a real difference to a patient’s quality of life. Some of these treatments are denied on the NHS because they are deemed to be cosmetic.

A study published in the British Medical Journal last year revealed that almost half of patients with facial paralysis are not receiving the recommended treatment that could prevent permanent disability. The charity Facial Palsy UK, which supports people affected by facial paralysis, says vast improvements are needed in the treatment of Bell’s palsy.

The research looked at how people diagnosed with Bell’s palsy between the years 2001 and 2012 were managed by GPs. It showed that despite clear evidence that the steroid prednisolone improves the chances of complete recovery, 44% of patients were not given any treatment.

Dr Charles Nduka, the founder of Facial Palsy UK, says faster access to care to minimise complications is needed, as well as specialist centres with a multidisciplinary approach to manage the range of symptoms. One of the difficulties in furthering our understanding of facial palsy, however, is that it is a slowly evolving condition, so any research to investigate preventions or interventions requires a long time.

But progress, no matter how small, can transform lives. Emma Barrett lost the ability to move the right side of her face when she was 18 after an operation to remove a tumour on her hearing nerve. After a decade of surgery, she is finally beginning to regain control of her face. Coming to terms with her smile coming back has been almost harder than losing it. “I’ve spent most of life without it, so to have it back now is very strange,” she says.

“I see myself before 18 and after as two separate people. I didn’t start truly being me until the facial palsy happened. It has made me who I am – hard, tough and frank. It has given me courage and strength.”

Francesca Martinez On Loose Women

May 27, 2014

Last week, but sometimes, old is gold.

An open letter to Katie Hopkins

May 24, 2014

leonc1963's avatarDiary of an SAH Stroke Survivor

From the President of Mental Wealth (Student Minds) Cambridge University

Dear Katie,

I think we should talk about mental health.

I was directed to your interview in the Tab by a friend who warned me that it would ‘hit a nerve’. I was intrigued; your highly publicised views on children’s names and people who have ginger hair have only ever indirectly struck me as faintly ridiculous. However, when the nonsense becomes vitriol, and is injected into the subject of mental health, my friend was right to know that I would be enraged.

As President of Student Minds Cambridge, and one of the founding trustees of teenage mental health charity ‘The Invictus Trust’, I deplore your views, and felt it necessary to set you right on a few things; not just on the behalf of everybody who has suffered from mental health issues in Cambridge, but also on behalf of all…

View original post 157 more words

JobCentre Staff Say They Are ‘Depressed’ Because Of Sanctioning

May 23, 2014

Labour exchange employees say they are ‘depressed’ by making people destitute on the orders of Work and Pensions Secretary Iain Duncan Smith

FRONTLINE Jobcentre staff renewed their campaign yesterday to scrap Tory benefit sanctions they are forced to hand down to Britain’s worst off.

Civil servants protested at PCS conference about the impact of the government’s welfare policies they witness everyday at work.

Unemployment benefit of just £71 per week can be stopped for two weeks under sanctions introduced by Work and Pensions Secretary Iain Duncan Smith.

Jobcentre worker Martin Humphrey told delegates about the “depressing” task of telling people their benefits have been stopped.

He said: “We have to say to people that they have to live on nothing for two weeks.

“To make people destitute for two weeks is despicable.”

Jobcentre staff exposed once again how they are given sanction targets to hit — a claim Mr Duncan Smith continues to deny.

Britain’s pensioners are also given just £110 a week while disabled people face cruel tests by private comapanies, PCS vice president John McInally pointed out.

He said the result has been soaring demand at food banks, a rise in homelessness and hate attacks on disabled people.

And he said: “As a union, we have a duty to stand up for our members and our services.

“It’s disgraceful that our members’ job to help people is being turned on its head in order to attack the most poor and vulnerable.”

Department for Work and Pensions rep Fran Heathcote said frontline civil servants had been the target for anger from disabled, elderly and unemployed people stripped of benefits.

But she said: “PCS members understand and share the concerns of the people we serve every day.

“They want to help the unemployed find work and pay benefits to pensioners, the sick and the disabled.”

Delegates resolved to fight welfare attacks alongside groups like Disabled People Against Cuts (DPac) and other trade unions.

The union also committed to exploring the viability of a universal basic income to replace Mr Duncan Smith’s failing Universal Credit scheme.

Leeds delegate Annette Wright pressed the union for a campaign of non-compliance with benefit sanctions.

She argued that legal advice given to the union would allow civil servants to boycott sanctions if PCS “first of all identifies a legitimate trade dispute.”

Shared Lives

May 23, 2014

Something for those of you following learning disability issues and wanting a break from politics today.

DWP Must Explain How WCA Will Meet Needs Of MH Claimants

May 22, 2014

Two years ago, two people who claim benefits on mental health grounds initiated a judicial review of the Atos Work Capability Assessment. The two people were supported by the Mental Health Resistance Network. In May 2013, the judges presiding over the case ruled that the WCA places mental health claimants at a “substantial disadvantage” and that the DWP should make “reasonable adjustments” to alleviate this.

The claimants who brought the case, DM and MM, asked the court to rule that the DWP should be responsible for obtaining further medical evidence at every stage of the process to improve the chances of a more accurate decision being reached about whether a person is able to work or to start preparing for work and to avoid the need for a face to face assessment in cases where this would be especially distressing for the claimant.

Read more about the case and the vigil to be held on Tuesday 8 July 2014 at 12 noon to 2pm in Kate Belgrave’s article.

The substantial hearing will be held on 7, 8 and 9th July 2014 at Royal Courts of Justice, London.

Blue Badge Mobility Insurance

May 22, 2014

A press release.

The team behind the leading independent pet insurer is launching a new niche insurance product aimed at the fast-growing mobility scooter and related markets.

Blue Badge Mobility Insurance has been launched by Mark Effenberg, the man heading the team behind market-leading independent insurer Healthy-Pets Insurance – a business he launched as a purely online business, possibly the first of its type, in 1997 – and which is a multiple award winner for customer service.

Mark developed Blue Badge Mobility Insurance as a direct response to his disappointment with the range and quality of mobility equipment insurance products currently available: his son has cerebral palsy and uses powered mobility equipment.

Blue Badge Mobility Insurance (www.BlueBadgeMobilityInsurance.co.uk) will provide policies covering use, protection and liability relating to scooter, wheelchair and home equipment, and will price-match like-for-like policies currently on the market. Other care-related insurance products will be launched throughout 2014 – all aimed at people who want to remain independent and receive care at home, and for those that care for them.

Typical guideline premium prices will be £24 a year for wheelchair cover, and from £59 for electric wheelchairs and mobility scooters.

“We’re an insurer that wears a smile, hides nothing and likes to help. What’s more, we simply do not have the overheads of the big insurers – and that means we can pass on cost savings to customers,” said Mark Effenberg, Chief Executive of Blue Badge Mobility Insurance.

“It’s a sensitive matter, but by the very nature of their use, mobility scooters can be hazardous to both operate and to be near: insurance isn’t a legal requirement, but there’s an increasing number of accidents – and there’s more than five times as many in use, probably approaching half a million – than ten years ago,” said Mark.

“Unfortunately, there are people out there who will want recompense beyond simple payment for repair for even minor accidental damage or injury resulting from an incident involving a mobility scooter, so while insurance is not compulsory, it is certainly advisable.

“We are coming at this from a particularly empathetic perspective because my son has cerebral palsy, so I have first-hand appreciation of both the issues of mobility, and, crucially, the challenges facing people simply wanting to take out mobility insurance.

“We’ll be applying the business and customer service principles established in our other online insurance businesses since the mid-late 1990s: put simply, we have low overheads because we are a 100% online insurer, we have exceptional underwriters in Ageas and we have a customer service and support system and team who are not just experienced, but also multiple winners of customer service awards. We work hard to see or deliver the positive and hassle-free whenever possible.”

http://www.BlueBadgeMobilityInsurance.co.uk/

Awards For BAME Disabled Children

May 22, 2014

 

 

Not Dead Yet UK’s Petition Against Law Change

May 22, 2014

Readers, this is a rather difficult post for me to write. I know that it is going to generate a lot of debate.

Regular readers will know that I never have supported, and never will support, assisted dying. I personally have always believed that disabled people deserve assistance to live, not to die.

 

However, I have also always known that this is a view that many people, disabled or otherwise, do not and will not share.

 

My personal views on this issue are the reason that I signed this petition against a law change on assisted dying.

 

I am not sharing this petition in any attempt to pressure you to change your personal views on this issue. If, however, you share my personal views, please consider signing it.

 

If you do not share my personal views, please use this thread as a place to share your personal views with us.

 

However, readers, please keep comments polite and respectful. We all know this issue generates strong debate and emotion on both sides.  Please make this a thread in which you read both sides and agree to disagree with whichever view you do not share.

 

Brits Returning To UK Face JobCentre Residency Test

May 21, 2014

British citizens travelling or studying abroad for more than three months are being refused benefits on their return under new rules designed to crackdown on benefit tourism from eastern Europe

Changes to the habitual residence test, designed to make it harder for European Union migrants to claim benefits, mean UK citizens who have been abroad for an extended period cannot claim jobseeker’s allowance (JSA) for the first three months after their return.

It means that people who travel for more than three months – including gap-year students, graduates and people taking career breaks – are being denied JSA to help them while they find a new job.

The new rule came in on 1 January, the same day it became legal for migrants from Romania and Bulgaria to enter the UK on work visas. In a government-issued statement on the new rules, the work and pensions secretary Iain Duncan Smith said: “The British public are rightly concerned that migrants should contribute to this country, and not be drawn here by the attractiveness of our benefits system.”

However, in attempting to combat predicted “benefit tourism” from eastern Europe, the government has made it impossible for UK citizens returning from abroad to claim as well. Yvette Cooper, shadow home secretary, said:, “British-born citizens who have been travelling, doing internships or living abroad temporarily shouldn’t be treated in the same way as those coming into our country for the first time.

“Habitual residency rules should be about making sure people who are new arrivals to the UK, and have not yet made any contribution or commitment to this country, do not claim benefits they are not entitled to. British citizens are in a completely different situation, and the government should recognise that.”

Rosie Smith, 24, and her boyfriend Alexi Dimond, 29, are both from Sheffield and returned to the country in March after almost six months living and doing voluntary work in Thailand. Smith had been in the same city since she was born. She wanted “a bit of a change”, she said: “I had been in Sheffield my whole life. I just wanted six months not in Sheffield.”

Smith saved money from her job as a nursery nurse, while Dimond worked in administration at an NHS dental hospital. When they got back, they wanted to look for work immediately and registered with the Jobcentre the next day. Dimond claims the person asking him questions for the habitual residence test was “very apologetic” for even making him undergo it.

He was told he was not, under the new benefits rules, considered habitually resident in the UK and would have to wait three months before claiming JSA. “I thought it was outrageous really,” he says, “I’ve contributed tax for the last six years working for the NHS. I think it’s ridiculous I’m not entitled to anything.” He now had no money at all, he said, and was relying on friends for food. Smith has moved back in with her parents.

Alongside his job, Dimond had done voluntary work with asylum seekers for five years before leaving the UK. When enquiring at the Jobcentre how he was supposed to survive, he was handed a leaflet entitled Emergency Help in Sheffield. It is the same leaflet he was issuing to asylum seekers before he went away. “It’s basically the help you get when there is literally nothing else,” he explained.

British citizens have always had to take a habitual residence test before being granted benefits, but only since the rules changed on 1 January have people been told they automatically fail for spending time out of the country.

Sam, 25, is back living with his parents in Manchester for the first time in seven years after being refused JSA on his return from a year in the Netherlands where he was doing a master’s in psychological research.

Sam had hoped he would get a job as soon as he got back “but that’s not the case,” he said, “so I applied for jobseeker’s soon after I got back.”

He was taken aback to have his application for benefits turned down. “I think if you’re looking for work you should get jobseeker’s allowance. That’s what makes sense,” he said. Sam’s parents are providing his food and shelter, and he is dipping into savings to travel to job interviews in London. He realises he is lucky to be cared for, claiming it is unfair on others “who don’t have that support. You would think then that support should come from the government.”

However, he is sympathetic to a tougherstance on immigration, agreeing that migrants “shouldn’t be able to claim [straight away] if they come from abroad.”

Emma Birks, 36, was a volunteer co-ordinator at a worker’s co-operative in Birmingham before deciding to go travelling in south-east Asia. “I’d been putting it off and putting it off,” she explained, “and then sometimes you think ‘life’s too short’.”

Since she got back in March, Birks has had no home and has been living between the houses of “three or four” charitable friends. She has been surviving by taking handouts and using credit cards. Because of her work, she knew about the habitual residence test and never dreamed she would fail it. She describes her situation now as “a bit demoralising and humiliating.

“The whole point of jobseeker’s allowance is to help you in that interim period where you’re looking for work, trying to find a new start or whatever. To me, that’s the whole point of jobseeker’s and it’s just failed me basically,” she said.

Dimond agrees. When we speak, he and Smith are at the beginning of five days of agency work, stopping people in a Doncaster shopping centre and collecting surveys about the facilities. He has had to borrow the money to get to work, and estimates he already needs “about six months” to catch up on his debt, assuming he gets a job soon. “It’s seriously affected my job search,” he said. “I don’t have money to get to interviews.”

Smith thinks they are victims of statistics. The Department for Work and Pensions (DWP) “are just trying to get as many people off their system so they can make their numbers look better … so they can say hardly anyone’s signing on anymore. But they’re just disqualifying everyone,” she said.

A DWP spokesman said: “It has always been the case that any UK national who chooses to live or work in another country for an extended period must, if they return to the UK and want to claim benefits, satisfy the habitual residence test by proving they have strong ties to the country and want to remain here.

“People who have paid enough national insurance in the UK do not have to wait for three months before claiming jobseeker’s allowance.” The spokesman did not respond when asked how much national insurance was enough, but none of the people interviewed were exempt from waiting three months.

The announcement of the changes in December confirmed the the introduction of the new three-month period in which people cannot claim benefits.

Terrible Treatment Of A Benefit Claimant With MH Issues By ATOS

May 21, 2014

A terrible story from ATOS Miracles.

 

An HORRENDOUS Atos interview today for this woman’s son with MH problems. Please share and refer any ideas and support back to us at ATOS Miracles so we can protect her anonimity but gets word back to her:

I posted yesterday that my son with anxiety & panic attacks was attending Atos interview today, you all gave me lots of advise & also my rights, I couldn’t tape it as I don’t have audio equipment & had short notice of the interview.

Well we had a really bad experience today she made me cry with her attitude towards mental heath & my son, firstly she refused me to speak on his behalf! She refused to look at notes I had written about his daily life! She refused to show me what she had written!
She was so rude…..she asked my son “What do you do all day stare at the wall?”Then when I said he also has anger issues…she asked” oh so you have a criminal record then?” ( he doesn’t have a criminal record by the way)

I have never been spoken to like this in my life! She said I’m ending the interview now! I said why? Please continue as we have travelled 30 miles to get here,she then said you’re not doing your selfs any favours with your responses! We had been in there at least 30 minutes answering questions,she told us to get out & she was not going to send the report.

My son then left very stressed & panicky,I stayed behind to ask her name & she wouldn’t tell me! She told me to get out! Security was even called to remove me….I’m 60 years old!! I then went to reception & got the number of Atos customer relations from the receptionist who was very helpful & even tears came to her eyes when she comforted me saying ” I also have a son the same as your son & he suffers from the same thing”.

When we got home I rang Atos she was full of apologies and said they would call me tomorrow from customer complaints. I will let you know the outcome…..please advise what you think will happen next as my son is so upset with the horrid experience that he says he will not attend another interview

One Mother’s Mission To Get NHS Staff Using Sign Language

May 21, 2014

This post makes a very good and important point. I couldn’t agree more that NHS staff need Sign Language training.